Gala Announcement and Some Exciting News to Share

Hi Everyone,

Isaac with Alberto Auricchio, the researcher who has discovered and created the MPS VI gene therapy.

Just a quick note to let our families, friends, and supporters know that our Annual Gala for a Cure and Rare Disease Symposium, traditionally set to take place in November each year, will have to be postponed. Our new date is April 4-5 for the Patient Symposium and April 6th for our Gala Celebration. I hope you can all join us during that time, because we certainly will have some wonderful news to celebrate together!

We’ve had to postpone our events because our family will be relocating to Italy beginning in October as Isaac has been accepted into the Gene Therapy Clinical Trial!!
So what does this mean exactly?
 
As many of you know, we have been tirelessly fundraising and supporting this gene therapy project for MPS VI since it’s inception 12 years ago. We’ve been fortunate to have a lot of support during these fundraising drives, and we’ve been lucky to help ensure this project and this research has thrived over that time. This gene therapy project has now moved from the lab to the clinical setting, and Isaac will be the 5th patient in the world, the second to be infused at the highest dose, and the 1st North American to receive gene therapy for MPS VI. We are beyond thankful, excited, and nervous all at the same time.

Isaac fighting for his life in the ICU last year.

It’s been a long journey since Isaac’s diagnosis 12 years ago.  Since then, we’ve had to fight to gain access to a life-sustaining treatment for him, watched him endure multiple and very serious surgeries and complications, and sat by him as he fought for his life in the ICU only 1 short year ago.  This has been an emotional battle, one that has taken courage, stamina, and a lot of Hope.  We’ve stood in the rain at small BBQs, coming away with something like $47 for our efforts, but always $47 closer to finding a cure for our kids.  We’ve hosted marathons, golf tournaments, our annual Galas.  We’ve travelled the world speaking about our organization, fighting for our son and other kids in need, sharing our story with anyone who would listen, anyone who could help us get closer to our goal.

We’ve had some wonderful help and support.  Elizabeth Witmer, the former PC politician in Ontario, helped us gain access to the drug Isaac needed to stay alive long enough to get us close to a cure.  Brandy and Roy Halladay were the first to believe in our organization when we were small and simply trying to survive.  And John Mayer has been alongside us to provide an escape for our boys every time he’s in town, always treating them both with such love and compassion, allowing them some time to spend with their musical hero.  He helped raise awareness of our son, of our cause, and our mission.  He helped us get here today.
We’ve also had dedicated physicians and surgeons (Dr. Karsli and Dr. Rutka!), and tremendous care here at Sick Kids’ Hospital (Dr. Raiman and our 4C Nurses!) to help us along the way.  We are lucky to have had someone to talk to through it all (Stuart and Jess), and someone who made us a priority in his life to help us raise the money that has helped bring us to this day (Danny Michel!)

This journey has also brought incredible families into our lives and to our organization to fight alongside us as part of The Isaac Foundation.

And you – you’ve all helped us get here for our kids, and we can’t thank you enough.

 

 

 

 

Through it all, we’ve always believed we would find a cure for our son, and we truly feel that this gene therapy is as close to curative (if not definitively curative) as we will ever get.  We are incredibly lucky that Isaac will have access, and we’re thankful to the Italian researchers for allowing us the opportunity to be in this clinical trial.

As we prep for the trial, we’re busy learning Italian, booking accommodations and travel – all from isolation in our home. As many of you know, the treatment that Isaac will receive gets attached to a harmless virus called AAV8. If he comes in contact with that virus (a virus which is highly prevalent in the general population) and develops neutralizing antibodies to that virus before his infusion, his body will fight off the gene therapy infusion, rendering the treatment unsuccessful. We know he is antibody negative for AAV8 now so we are taking all precautions to ensure he does not get this virus before his infusion in November.
 
Since June, we’ve been living in virtual isolation, ordering our groceries online and having them disinfected before coming into the house. We’ve had no visitors, don’t go visiting places, and are simply spending time with each other, enjoying our wonderful lives, allowing the news to soak in, and celebrating together. Gabriel and I have wandered the golf course together, and we’ve been taking some family journeys to secluded parks and beaches and drive-in movie theatres, as well as hanging out by our own pool at home.  Now that we are a few weeks from leaving, we thought it time to share with you all the good news and thank you for the incredible support you’ve provided along the way.
 
We will update as much as we can as things progress. For now, thanks for being with us throughout this journey, for supporting us through the difficult and the beautiful moments alike. We’re forever grateful for the support we’ve received, for your help in our mission, and for your steadfast belief that we can, and will, work to find a cure for our son.
 
We’re almost there, and we look forward to packing a full house at our GALA FOR A CURE in April to celebrate, thank each and every one of you in person, and then prep for the next phase – bringing this gene therapy to Canada and the rest of the world for all patients in need.
With Love Always,
The McFadyen Family

Tentative Meeting Scheduled

Hi Everyone,

As promised, I’m back to provide another update.  After speaking with the Ministry this afternoon, the Minister has set aside some time to meet with The Isaac Foundation and Morgan’s parents.  Things are tentatively set for Thursday.  However, that meeting will only be taking place if the Minister agrees to have Dr. Paul Harmatz on the line from Oakland Children’s Hospital and if Morgan’s MLA, Jake Stewart, can join us.

The rationale behind having both Dr. Harmatz and Mr. Stewart join us is simple – Dr. Harmatz is a world renowned expert in the field of MPS and this treatment and it’s important for him to be on hand to answer any questions that might be raised in the meeting and to try to shed some clarity on what this treatment can and can’t do for patients.  If the Minister doesn’t want Dr. Harmatz present, it indicates to us that the Minister doesn’t want to seek information and advice from the people that are the best in their field.  If that’s the case, we see no reason to meet.  We want to hear from the best, and we are hopeful Minster Boudreau does as well.

And Jake Stewart?  Well, he’s been the support for this family since the very start of this process, someone who’s been kind and caring when they need it the most.  The compassion he’s shown for Morgan and his family has been wonderful, and his support during such a meeting will be important.

I’ve made the request to the Ministry and await their reply.  So, for now we have a tentative meeting.  Hopefully we can get things sorted out soon.

In the meantime, if you haven’t had the opportunity to send Premier Gallant or Minister Boudreau your thoughts on this situation, you can use the form below.  Your message will land directly in their in-boxes, and your voice can be added to those that are speaking out in support of Morgan, of the life-saving treatment he needs, and for doing what’s right in the Province of New Brunswick.

Thanks, as always, for your support.

A.

#Hope4Morgan – Send Premier Gallant and Minister Boudreau An Email!

Are you concerned with the recent decision by the Gallant Government to deny Morgan Doucet the life-saving treatment he needs?   We want the tens of thousands of people who have read Morgan’s story to have their voice heard.  Please take a moment to send your thoughts and concerns to Premier Gallant and to Minister Boudreau.  The form below will ensure your message will land directly in their in-box.  Please be respectful in your messages and thank you for your continued support as we work to ensure our kids get the help they need.

Your Name (required)

Your Email (required)

Subject

Your Message

Prove You're Human 🙂

 

 

This Is Not OK – When Answers Aren't Really Answers

To me, this is the most difficult part to accept. No appeal? No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death? Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate. Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything. They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate. Not so for this little boy, it appears, and that will never be OK with me.  ~Andrew McFadyen, Executive Director, The Isaac Foundation

Late last night, I boarded a plane to Fredericton with hopes of meeting with the Minister of Health, Victor Boudreau, about 10-year-old Morgan Doucet.  Recently, the Minister denied access to the life-saving medication that Morgan needs immediate access to, thereby condemning Morgan to a life of pain and suffering, and immediately signalling that Morgan’s care should enter a palliative approach to his disease.

This is NOT OK, for a whole host of reasons, not least of which is that we CAN help Morgan, we can stop his disease progression, and we can do it quickly with access to the treatment he needs.

This is not OK because the treatment Morgan needs has been approved by Health Canada for almost 2 years now, and it’s being used to help save the lives of  33 patients throughout the country, while being fully reimbursed for use in patients in Saskatchewan, Ontario, and Quebec.  It’s also funded in most developed countries throughout the world – including the UK – where they recently took steps to fund every patient that needs access immediately.

This is not OK because Morgan’s review was done by one person alone, a person who has never used this treatment before and a person who isn’t  a practicing physician anymore.  He’s a bureaucrat, paid by the government of Ontario to review files and render life and death decisions about kids – life and death decisions that come without rigorous debate and input from the true experts in the field.

This is not OK because the overwhelming evidence and recommendations by those true experts in the field all conclude that this drug works and should be given to patients immediately in order to stave off the ravages of the disease.  It has been prescribed by Morgan’s genetics specialist, it has been recommended for use in patients by the Canadian Expert Opinion on Morquio Syndrome and it is recommended as the front line treatment for Morquio Syndrome in the International Treatment Guidelines for Morquio Syndrome.  In fact, it’s considered the gold standard of care for patients suffering from this disease, and it’s inhumane and unethical to deny patients the help they need when they need it most.

This is not OK because we are allowing those bureaucrats and politicians to overrule and contradict medical experts, clinicians, and researchers, regarding best practice and treatment for this little boy suffering from this devastating disease.  In essence, the Minister and his bureaucrats are making clinical decisions where they are not qualified to do so.

And this is not OK because denying life-saving treatment to dying kids is not what our Health Care System is supposed to stand for, it’s not the principles that our country and our Medicare Act were founded on, and it’s not who we want to be as a Canadian People.

With all this on my mind, I took the late flight here for an arrival in New Brunswick in the middle of the night.  I came  to Question Period this morning to hear MLA Jake Stewart ask the hard questions of the Minister that he’s been avoiding answering.  Jake was poignant, thoughtful, and strong in his belief that Morgan should receive access to this drug.  After all, the Liberals themselves said last year that they “can – and MUST – do better” for our kids suffering from rare diseases.

With three questions asked, Minister Boudreau decided not to provide proper answers.  He started by saying there is a process, and that process includes a CDR report and they won’t fund drugs until that process is complete (it is, and was completed a long time ago).  He neglected to mention that no MPS drugs ever get the blessing of the CDR panel, yet New Brunswick is paying for every other drug for MPS diseases that are currently on the market.  He neglected to point out that the only patient with MPS in this province that isn’t receiving the life saving drug they need is Morgan.  He neglected to say that this has less to do with what the experts say and more to do with the cost of the drug, something that should never be a hinderance to proper care in this country.

Minister Boudreau commented on the process used – Morgan’s file was sent to a reviewer in Ontario to make a decision whether to treat or not.  One reviewer.  With no avenue for appeal after any decision is rendered.  He didn’t comment on that in Question Period, but after the decision was delivered I asked the Ministry of Health how we can appeal the ruling.  I was ignored.  I asked the Minister of Health 7 times for a meeting or information about how we can appeal the ruling.  I was ignored.  And I asked the Premier multiple times for a meeting to discuss an appeal.  As you all know, I received a note telling me that he was unable to meet, with apologies “for the inconveniences this may cause.”

To me, this is the most difficult part to accept.  No appeal?  No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death?  Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate.  Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything.  They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate.  Not so for this little boy, it appears, and that will never be OK with me.

As I was typing this entry, Minister Boudreau dropped over to meet with me to discuss Morgan and his plea for help.  I am thankful that he did, as I was able to present everything I’ve written above.  He made a commitment to take a look at this case but truly believes in the process put in place.  In his words, he will make not promises or commitments, but he will look at things and get back to me.

Knowing this, I implore Minister Boudreau to take a real look at this case and seek a new review of Morgan’s application.  I asked Minister Boudreau to seek outside opinions from a panel of 3 or 5 International and Canadian experts that deal front-line with this disease and this treatment each and every day.  I asked Minister Boudreau to allow a rigorous discussion on all available evidence that exists on this drug and the impact it has on patients, and I asked for expediency because it’s unethical to make a child and his family wait.

I asked this to allow for a transparent and fair process for Morgan.  His life depends on it and it’s the right thing to do.  And in the end, if the Minister doesn’t want to listen to and seek feed back from clinical expert opinion, patient reported outcomes, peer-reviewed published journals, etc., then who will he listen to?  The opinion of 1 person who has never used this treatment and didn’t engage with those experts to help make his decision on Morgan’s fate?

If that’s the case, it’ NOT OK.

I’ll be here for a short while and will be putting out a PR tomorrow morning so that media can cover this story if they choose.  Thank you for all of your support over the past little while – our last entry was seen over 20,000 times in a few short days.  Sharing Morgan’s story is helpful, and staying ready to fight means the world to us.

I’ll update with any news as it develops.

This Is Not OK – When Answers Aren’t Really Answers

To me, this is the most difficult part to accept. No appeal? No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death? Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate. Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything. They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate. Not so for this little boy, it appears, and that will never be OK with me.  ~Andrew McFadyen, Executive Director, The Isaac Foundation

Late last night, I boarded a plane to Fredericton with hopes of meeting with the Minister of Health, Victor Boudreau, about 10-year-old Morgan Doucet.  Recently, the Minister denied access to the life-saving medication that Morgan needs immediate access to, thereby condemning Morgan to a life of pain and suffering, and immediately signalling that Morgan’s care should enter a palliative approach to his disease.

This is NOT OK, for a whole host of reasons, not least of which is that we CAN help Morgan, we can stop his disease progression, and we can do it quickly with access to the treatment he needs.

This is not OK because the treatment Morgan needs has been approved by Health Canada for almost 2 years now, and it’s being used to help save the lives of  33 patients throughout the country, while being fully reimbursed for use in patients in Saskatchewan, Ontario, and Quebec.  It’s also funded in most developed countries throughout the world – including the UK – where they recently took steps to fund every patient that needs access immediately.

This is not OK because Morgan’s review was done by one person alone, a person who has never used this treatment before and a person who isn’t  a practicing physician anymore.  He’s a bureaucrat, paid by the government of Ontario to review files and render life and death decisions about kids – life and death decisions that come without rigorous debate and input from the true experts in the field.

This is not OK because the overwhelming evidence and recommendations by those true experts in the field all conclude that this drug works and should be given to patients immediately in order to stave off the ravages of the disease.  It has been prescribed by Morgan’s genetics specialist, it has been recommended for use in patients by the Canadian Expert Opinion on Morquio Syndrome and it is recommended as the front line treatment for Morquio Syndrome in the International Treatment Guidelines for Morquio Syndrome.  In fact, it’s considered the gold standard of care for patients suffering from this disease, and it’s inhumane and unethical to deny patients the help they need when they need it most.

This is not OK because we are allowing those bureaucrats and politicians to overrule and contradict medical experts, clinicians, and researchers, regarding best practice and treatment for this little boy suffering from this devastating disease.  In essence, the Minister and his bureaucrats are making clinical decisions where they are not qualified to do so.

And this is not OK because denying life-saving treatment to dying kids is not what our Health Care System is supposed to stand for, it’s not the principles that our country and our Medicare Act were founded on, and it’s not who we want to be as a Canadian People.

With all this on my mind, I took the late flight here for an arrival in New Brunswick in the middle of the night.  I came  to Question Period this morning to hear MLA Jake Stewart ask the hard questions of the Minister that he’s been avoiding answering.  Jake was poignant, thoughtful, and strong in his belief that Morgan should receive access to this drug.  After all, the Liberals themselves said last year that they “can – and MUST – do better” for our kids suffering from rare diseases.

With three questions asked, Minister Boudreau decided not to provide proper answers.  He started by saying there is a process, and that process includes a CDR report and they won’t fund drugs until that process is complete (it is, and was completed a long time ago).  He neglected to mention that no MPS drugs ever get the blessing of the CDR panel, yet New Brunswick is paying for every other drug for MPS diseases that are currently on the market.  He neglected to point out that the only patient with MPS in this province that isn’t receiving the life saving drug they need is Morgan.  He neglected to say that this has less to do with what the experts say and more to do with the cost of the drug, something that should never be a hinderance to proper care in this country.

Minister Boudreau commented on the process used – Morgan’s file was sent to a reviewer in Ontario to make a decision whether to treat or not.  One reviewer.  With no avenue for appeal after any decision is rendered.  He didn’t comment on that in Question Period, but after the decision was delivered I asked the Ministry of Health how we can appeal the ruling.  I was ignored.  I asked the Minister of Health 7 times for a meeting or information about how we can appeal the ruling.  I was ignored.  And I asked the Premier multiple times for a meeting to discuss an appeal.  As you all know, I received a note telling me that he was unable to meet, with apologies “for the inconveniences this may cause.”

To me, this is the most difficult part to accept.  No appeal?  No opportunity to ensure the decision was rendered correctly before we condemn this little boy to a life of pain and suffering…to death?  Prisoners on death row – prisoners there for the heinous crimes they have committed – have multiple opportunities to appeal their decided fate.  Before that, their fates get decided by collections of people, people who have the opportunity to hear all viewpoints, all expert testimony, everything.  They exhaust all avenues in making death sentence rulings, and then we allow those prisoners the opportunity to appeal and fight their fate.  Not so for this little boy, it appears, and that will never be OK with me.

As I was typing this entry, Minister Boudreau dropped over to meet with me to discuss Morgan and his plea for help.  I am thankful that he did, as I was able to present everything I’ve written above.  He made a commitment to take a look at this case but truly believes in the process put in place.  In his words, he will make not promises or commitments, but he will look at things and get back to me.

Knowing this, I implore Minister Boudreau to take a real look at this case and seek a new review of Morgan’s application.  I asked Minister Boudreau to seek outside opinions from a panel of 3 or 5 International and Canadian experts that deal front-line with this disease and this treatment each and every day.  I asked Minister Boudreau to allow a rigorous discussion on all available evidence that exists on this drug and the impact it has on patients, and I asked for expediency because it’s unethical to make a child and his family wait.

I asked this to allow for a transparent and fair process for Morgan.  His life depends on it and it’s the right thing to do.  And in the end, if the Minister doesn’t want to listen to and seek feed back from clinical expert opinion, patient reported outcomes, peer-reviewed published journals, etc., then who will he listen to?  The opinion of 1 person who has never used this treatment and didn’t engage with those experts to help make his decision on Morgan’s fate?

If that’s the case, it’ NOT OK.

I’ll be here for a short while and will be putting out a PR tomorrow morning so that media can cover this story if they choose.  Thank you for all of your support over the past little while – our last entry was seen over 20,000 times in a few short days.  Sharing Morgan’s story is helpful, and staying ready to fight means the world to us.

I’ll update with any news as it develops.

"It's A Sin To Kill A Mockingbird"

Hi Everyone,

While I write this entry, I’m sitting on a plane heading back home.  It’s been a long and stressful week here in Regina, and I’m afraid we’re no closer to getting the help we need for our kids in Saskatchewan.

I started this week with a lot of Hope – we were promised a decision from the Ministry of Health within 7-10 days.  It’s a life or death decision, and one that shouldn’t be taken lightly.  Last Monday, the Minister of Health, Dustin Duncan, ordered a new review of the kids’ applications, and he promised an expedited review of that decision.  Since that time, he’s appeared on television and spoke mis-truths about the drug in question, misleading the public about how well the drug works and who it works best for.

Did the Minister intentionally lie about these things?  Only time will tell but personally, I don’t think he did.  In truth, I think the Minister was given incorrect information from the Ministry of Health – from the very bureaucrats that we’ve been talking to regarding these kids and this drug for over a year.  The information provided to the Minister was that this drug doesn’t work for kids over the age of 5, even though the only data that exists for how well the drug works was collected in children over 5.  In fact, of the 29 patients receiving this drug in the country, 27 of them are over the age of 5.  It was an error, and one that the Minister went in front of the cameras to repeat.

We put out a Press Release on Thursday to refute the claims the Minster made in public.  It was important for us to set the record straight so that the public fully understood the facts that surround this decision.  As an advocacy body, it would have been irresponsible of us to do otherwise.

Since that time, we have been hard-pressed to get any information from the Ministry or the Minister of Health about the status of the review, how long the review will take, or when Amir and his family can expect a decision on the future of their children.  Every time I called the Ministry for an update, I was told there was nothing new to tell me.  The Canadian MPS Society and The Isaac Foundation tried on numerous occasions to get updates and information and each and every time we were presented with the same message “We have nothing new to update.”  It was clear they were directed to keep us in the dark.

In an effort to meet directly with the Minister for an explanation, I flew to Regina.  I sat through question period each day, reached out to the Minister a few times each day, and politely requested an update on the kids’ files.  Our partners at the Canadian MPS Society have been just as ardent in their support of this family, and have also requested updates.

When I arrived at the Legislature on Tuesday, I brought with me a small gift for the Minister – a small card, my blog about Diefenbaker,  and a copy of To Kill A Mockingbird.  The message I inscribed was short.  It read:

Dear Minister Duncan,

I hope we get a chance to connect in person sometime today. In the meantime, I’m leaving you a copy of my favourite book and a blog I wrote a while ago from the grave of John Diefenbacker.

As you know, Mockingbird is a novel about courage, and doing what you know is right, no matter what the cost. It’s how I live my life each and every day, and I hope it gives you a glimpse into why I fight so hard for our kids.

In Mockingbird, Atticus says “Courage is not a man with a gun in his hand. It’s knowing you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.”Our kids have been fighting battles – large and small – every single day of their lives. This fight for their only Hope shouldn’t be one of them.Warm Regards,

A.

image1-8It was a small gesture, but one filled with a message I felt was important to send.  It’s a message that hangs on my wall in my office, with the photo you see above.  In the end, it was an explanation on WHY we do what we do.  Since that time,  I’ve not been able to get any news on our kids, and the lack of information for us to share with Amir and his family is disheartening.  For the family, it’s cruel and heartless.  They go to sleep every night wondering if the next day is the day they will hear news about the future for their kids.  As Amir said, “It’s like Night and Night.  There is no shining anymore.”

On the way to the airport tonight, I started thinking about Mockingbird, and Atticus, and the message I was sending.  As many of you know, it’s my favourite story, and Atticus is someone I try to emulate as I work my own way through fatherhood, adulthood, and through this tough world of rare diseases.  I started thinking about what that book means to me, and the beautiful morals the story tries to bestow on its readers.

In reflecting on Mockingbird, I think I may have inscribed my message wrong for the Minister.  Instead of Atticus’ wisdom on what true courage is, I should have left him with another quote – the one where the novel takes it’s title from.  I should have left him with this:

“Shoot all the blue jays you want, if you can hit ’em, but remember it’s a sin to kill a mockingbird.”

His sister follows by saying “Mockingbirds don’t do one thing but make music for us to enjoy . . . but sing their hearts out for us. That’s why it’s a sin to kill a mockingbird.

It’s the key quote in the novel and for me it rings true each and every time I have to fight for what is right for our kids.

You see, our beautiful children are just like those Mockingbirds – they don’t do anything except bring us joy.  We put everything we have into our children – we see our Hopes in them, our dreams in them.  We’d do anything for them, even sacrifice ourselves for their survival.  They are the first thing we think of when we wake up, the last thing we think about before we go to bed.  For those of us up at night dealing with the rare disease our children are battling, it is them that keep us awake.  We live through them, laugh with them, and cry when they are hurting.  They are our everything – our joy and our lives.  They are, quite simply, our Mockingbirds.

When our kids have to fight for treatment – especially treatments that we KNOW work – it’s like the governments are out hunting Mockingbirds.  Once – just once I want these people to step back and hear their song.  I want Minister Duncan to truly hear them.  And when he does, I want him to take an objective look at the files that are before him – a look free of bias, of dollar signs, free of anger.  Because if he does, I know he’ll have the courage to save these kids.

I’ll keep you all up to date as things progress.  For now, I’m going to open up MY copy of Mockingbird, and try to enjoy the flight home.

With Love,

A.

“It’s A Sin To Kill A Mockingbird”

Hi Everyone,

While I write this entry, I’m sitting on a plane heading back home.  It’s been a long and stressful week here in Regina, and I’m afraid we’re no closer to getting the help we need for our kids in Saskatchewan.

I started this week with a lot of Hope – we were promised a decision from the Ministry of Health within 7-10 days.  It’s a life or death decision, and one that shouldn’t be taken lightly.  Last Monday, the Minister of Health, Dustin Duncan, ordered a new review of the kids’ applications, and he promised an expedited review of that decision.  Since that time, he’s appeared on television and spoke mis-truths about the drug in question, misleading the public about how well the drug works and who it works best for.

Did the Minister intentionally lie about these things?  Only time will tell but personally, I don’t think he did.  In truth, I think the Minister was given incorrect information from the Ministry of Health – from the very bureaucrats that we’ve been talking to regarding these kids and this drug for over a year.  The information provided to the Minister was that this drug doesn’t work for kids over the age of 5, even though the only data that exists for how well the drug works was collected in children over 5.  In fact, of the 29 patients receiving this drug in the country, 27 of them are over the age of 5.  It was an error, and one that the Minister went in front of the cameras to repeat.

We put out a Press Release on Thursday to refute the claims the Minster made in public.  It was important for us to set the record straight so that the public fully understood the facts that surround this decision.  As an advocacy body, it would have been irresponsible of us to do otherwise.

Since that time, we have been hard-pressed to get any information from the Ministry or the Minister of Health about the status of the review, how long the review will take, or when Amir and his family can expect a decision on the future of their children.  Every time I called the Ministry for an update, I was told there was nothing new to tell me.  The Canadian MPS Society and The Isaac Foundation tried on numerous occasions to get updates and information and each and every time we were presented with the same message “We have nothing new to update.”  It was clear they were directed to keep us in the dark.

In an effort to meet directly with the Minister for an explanation, I flew to Regina.  I sat through question period each day, reached out to the Minister a few times each day, and politely requested an update on the kids’ files.  Our partners at the Canadian MPS Society have been just as ardent in their support of this family, and have also requested updates.

When I arrived at the Legislature on Tuesday, I brought with me a small gift for the Minister – a small card, my blog about Diefenbaker,  and a copy of To Kill A Mockingbird.  The message I inscribed was short.  It read:

Dear Minister Duncan,

I hope we get a chance to connect in person sometime today. In the meantime, I’m leaving you a copy of my favourite book and a blog I wrote a while ago from the grave of John Diefenbacker.

As you know, Mockingbird is a novel about courage, and doing what you know is right, no matter what the cost. It’s how I live my life each and every day, and I hope it gives you a glimpse into why I fight so hard for our kids.

In Mockingbird, Atticus says “Courage is not a man with a gun in his hand. It’s knowing you’re licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.”Our kids have been fighting battles – large and small – every single day of their lives. This fight for their only Hope shouldn’t be one of them.Warm Regards,

A.

image1-8It was a small gesture, but one filled with a message I felt was important to send.  It’s a message that hangs on my wall in my office, with the photo you see above.  In the end, it was an explanation on WHY we do what we do.  Since that time,  I’ve not been able to get any news on our kids, and the lack of information for us to share with Amir and his family is disheartening.  For the family, it’s cruel and heartless.  They go to sleep every night wondering if the next day is the day they will hear news about the future for their kids.  As Amir said, “It’s like Night and Night.  There is no shining anymore.”

On the way to the airport tonight, I started thinking about Mockingbird, and Atticus, and the message I was sending.  As many of you know, it’s my favourite story, and Atticus is someone I try to emulate as I work my own way through fatherhood, adulthood, and through this tough world of rare diseases.  I started thinking about what that book means to me, and the beautiful morals the story tries to bestow on its readers.

In reflecting on Mockingbird, I think I may have inscribed my message wrong for the Minister.  Instead of Atticus’ wisdom on what true courage is, I should have left him with another quote – the one where the novel takes it’s title from.  I should have left him with this:

“Shoot all the blue jays you want, if you can hit ’em, but remember it’s a sin to kill a mockingbird.”

His sister follows by saying “Mockingbirds don’t do one thing but make music for us to enjoy . . . but sing their hearts out for us. That’s why it’s a sin to kill a mockingbird.

It’s the key quote in the novel and for me it rings true each and every time I have to fight for what is right for our kids.

You see, our beautiful children are just like those Mockingbirds – they don’t do anything except bring us joy.  We put everything we have into our children – we see our Hopes in them, our dreams in them.  We’d do anything for them, even sacrifice ourselves for their survival.  They are the first thing we think of when we wake up, the last thing we think about before we go to bed.  For those of us up at night dealing with the rare disease our children are battling, it is them that keep us awake.  We live through them, laugh with them, and cry when they are hurting.  They are our everything – our joy and our lives.  They are, quite simply, our Mockingbirds.

When our kids have to fight for treatment – especially treatments that we KNOW work – it’s like the governments are out hunting Mockingbirds.  Once – just once I want these people to step back and hear their song.  I want Minister Duncan to truly hear them.  And when he does, I want him to take an objective look at the files that are before him – a look free of bias, of dollar signs, free of anger.  Because if he does, I know he’ll have the courage to save these kids.

I’ll keep you all up to date as things progress.  For now, I’m going to open up MY copy of Mockingbird, and try to enjoy the flight home.

With Love,

A.

Revisiting an Old Post – My Inspiration To Serve

Hi Everyone,

As I get set to head to Saskatchewan (still my favourite Province to visit!) to meet with the Minister of Health and other political leaders about a family requiring access to therapy, I thought I would re-post an old entry I wrote from Saskatoon, at one of the most peaceful spots I visited on my journey.

I wrote this as I was making my first decision to enter the world of politics, as I sat by the grave of the great John Dieffenbaker in Saskatoon and wrote back and forth to Stuart Mclean, a friend of mine and a great Canadian in his own right.  I posted this in May of 2009 and wrote about my passion and excitement to help shape Canada for the better, feelings I continue to hold today, though in a different light.  I take my role in the world of Rare Diseases very seriously, and will do everything I can to protect our kids who desperately need our help, who desperately need access to treatments we’ve already approved here in Canada.  I owe it to my own son to continue fighting for our kids, and I’ll do so until we find the cure we’ve been searching for all these years.

Enjoy.

May, 2009

Hey Folks,

I am currently sitting at one of my favourite places in Canada, beside the tombstone of John Diefenbaker, Canada’s 13th Prime Minister.  I first fell in love with this spot at this time last year, when I travelled to Saskatchewan on a class trip with my grade 8 class.  The week had been a long one, and a busy one, and I managed to escape here for lunch and some respite on my final day in town.

I sat here, in the very spot that I am typing from now, and wrote a journal entry to a friend of mine back in Ontario.  He has a radio show on CBC called The Vinyl Cafe.  At the time, entering public life was an idea that had been pulling at me for some time, since before my son Isaac got sick.  I think the atmosphere here inspired me and I just had to put down on paper…er…email what was going through my mind.  Here’s what I wrote…

June, 2008

Dear Stuart,

After a long and arduous week, I have finally arrived at the Diefenbaker centre at the University of Saskatchewan. I had two things that I wanted to see while I was away; the vast expanse of prairie farmland and the final resting place of the enigmatic Chief himself.

Being locked up in paperwork forced me to miss our two-day trip through the countryside and down to Moose Jaw, hence removing the chance for me to see the land that W.O Mitchell so elequently wrote about in his masterpiece, Who Has Seen The Wind. But I was determined to get here today and get a glimpse of the life that was John Diefenbaker.

As I type, I am laying in the grass beside the tombstone and final resting place of the great man himself. A gopher is watching my every move as the prairie sun beats down upon me. Diefenbaker must have selected this resting place for himself, knowing that those visiting his grave would have to look over and about the land he loved so much.

As I aspire for a life in public office, I’m inspired by the man whose grave I’m quietly visiting. I love that I am here and being reminded that he never gave up his dream of serving the people, never lost his drive to fight for what he believed in, and always remembered his roots.

This exchange has brought me a full week in Kingston, where I was able to teach our kids about how incredible John A. was for our city and country. Now I get a true glimpse at what the Chief meant to the people in the West. I see who he fought for; the disadvantaged, the minorities, the real people that have built our great nation, and I’m proud that he is recognized with this museum, and I’m proud that people still stop by here to pay him homage.

I will come back here sometime, in the near future or a long way down the road, if only to keep my inspiration for a life of service in politics at the forefront of my mind.

 

See you when I see you,

A.

Stuart emailed me back almost immediately, and included a journal entry that he had written from the grave side of Sir John A. MacDonald who was, of course, Canada’s first Prime Minister.  Here’s what HE wrote…

June, 2008

Andrew,

Thanks for the picture. I visited his house in Prince Albert a couple of months ago.  A couple of years ago I  spent a few hours one afternoon by Macdonald’s grave in Kingston, Ontario and wrote a script for the show.

to wit:

I am writing these words in a child’s scribbler sitting under a pine tree that is growing by the gravesite of Sir John A Macdonald. I have come here by train along the same railbed perhaps that he once rode, maybe even gazing at the same fields, the same farms, perhaps the very same trees, on the two hour morning run in from Toronto.

It took less than five minutes and costs less than five dollars to get here by taxi from the train station. And now sitting here with my coat spread on the grass beneath me a spider working its jerky way across my right knee I can hear the whistle of trains as they shunt through the station below me.

This grave that I have meant to visit for years is marked by a simple stone cross, no more than three feet high.  The government sign marks his grave as a Canadian Prime Minister. But the sign also says the grave sight was fixed up in 1982  — which is when the black wrought iron fence was run around it, I decide.

And the stone cross that I have come to see seems too polished to have weathered many Canadian winters. And I am thinking, as I sit here in 2002, 111 years since he died, in a world that is often too shiny for my taste, that I never got the impression he fretted over heavy weather or would be offended by the work of the wind.

I would like to tell him as I sit under this tree and feel the warmth of the June sun on my face, that I was glad to be born in this corner of the world that he coaxed into being. That we are still here and that we know ourselves to be among the lucky.

But mostly I would like to tell him that I travel by train whenever I can, and that he could still travel by train if he wanted; still all the way to the pacific, and on the way over the prairie where

I would like to tell him, if he wanted he might still, if the conductor was feeling good, ride between the cars and throw the top half of the door open so he could stick his head out and feel the wind on his face and count the ducks in the ponds as he went by.

And I would like to tell him that just last weekend I found myself walking by railroad tracks with a young man, a boy still in school who turned to me and said, “I like the smell of trains.” I would like to tell him that.

But mostly I would like to tell him that I wasn’t the only person sitting here on this June afternoon on this pleasant hillside by his grave thinking these things.

– Stuart

Our exchange made me smile and capped off one of those moments in life when things come clearly into perspective.

It felt good to be here then, and it feels good to be here once more.  I hadn’t realized that I would have the opportunity get back here so soon.  It’s another beautiful day on the Prairies, and the “Land of the Living Skies” is truly living up to its name.  To my left, I can see downtown Saskatoon on the horizon, and to my right, nothing but trees and nature.  I am sitting with two friends and we are all just taking in the serenity of this spot beside Dief’s grave.

I am touched by the amount of people that walk by and then stop for a moment of silence at the final resting place of John Diefenbaker.  I watched the first few people stop and then continue along on their walk through the campus.  But I wanted to know why they were here, and from where, so I started to engage them in conversation.  The first man that I spoke with, as I sat in the grass with my laptop, was from Toronto, simply visiting Saskatoon for a few days until he reached Regina and his business meeting.  He had a video camera and a digitial camera with him and he was filming the walk up to Dief’s grave.  He paused for a moment and took in the atmosphere, the warm Prairie sun, and the sound of the wind rushing through the trees.  He seemed almost awe-struck, and told me that he just had to get to this spot before he headed south.

The next group that I talked to was an elderly couple with their two friends.  They came up to visit from the south of the province, almost as far south as the border.  The one gentleman told me that he came here as a student many years ago, when there were only 2500 people registered at the University.  His daughter was a retired professor from Queen’s University in Kingston, Ontario, the city that I’m visiting here from with my grade 8 class.  His daughter would have taught my wife in the Faculty of Nursing, a fact that pleased both him and his wife.

Canada is a small country once you start talking to people.  Don told me that Diefenbaker once came to his father’s house for coffee, simply because his dad had invited him to.  And he told me that Dief would do that often, visit people in their homes, because he was just a regular person, just like everybody else.  As Don stated, “he had his problems too, but that’s also just like everybody else.”

I think this is why I admire Diefenbaker as much as I do.  There are those out there that would object to Dief’s name being printed on this blog site, the blog of a hopeful candidate for the Liberal Party of Canada.  But what made Dief great wasn’t the fact that he was Conservative, nor was it the fact that he was even the Prime Minister.  To me, Dief was great because he worked hard to represent the people that he cared for most; the people that needed it the most.  Dief was a politician for the people, something we don’t see enough of in today’s rough and tumble world of politics.  Dief cared about the “ordinary Canadian”, the people that had struggles but were relentless in their determination to persevere.  Dief was a community politician, and he turned his difficult upbringing into a passion and penchant for helping those who needed guidance.

History has, and always will, allow us to look at our heroes in a different light, away from the glare of public scrutiny, and the pressure to step in line with the status quo.  I hope there will be a day when people can look back at the things that Diefenbaker accomplished for our country and can appreciate that he always had the betterment of the nation as his goal.  Dief looked out for us, and provided countless citizens with a sense of hope for their future without ever asking for anything in return.  THIS should be the everlasting quality that  we seek from our politicians today, for it’s this quality that will help us to grow and evolve as a nation.

Stuart wrote of the people that were sitting at MacDonald’s grave with him and his longing for MacDonald to know that they were there for him.  I too have been touched by the people that have stopped by for a few moments with Dief, a final acknowledgement that he made a difference in our world, and a thank you for giving himself to those who needed it most.

I hope I can give back to my community someday and have the opportunity to work hard to help our country get back to community representation and a government “of the people, by the people, and for the people.”

I’m about to open up Obama’s “Audacity of Hope”, and I can’t think of a better place to read it than here by the graveside of one, John Diefenbaker.

So long from Saskatoon.

A.

10693630_328239647353454_1314403896_n

Russian Roulette

Hi Everyone,

I’m sitting here, once again, in the OR waiting room at Sick Kids Hospital in Toronto.  I can’t recall how many times I’ve sat in this room, waiting for news on my son.  But I do remember how awful it is in here – I’ve often called this place the worst place on earth – it always feels stuffy, the atmosphere grim, the energy of each and every one of us in here drained completely.  And the stress.  The stress permeates the room from the moment you enter.  It heightens in everyone as soon as a doctor appears in the door – each of us wondering if it’s news for us, and if that news will be good.  The stress breaks once parents get word that their children are now ready to be seen, but only for a short while.

They’ve tried to change this room over the years.  It’s received a fresh coat of paint – it seems lighter in here, and there is a Christmas tree in the corner to make people feel at home and cheery.  There is a TV on the wall that updates all the patients and the stage they are at…In Holding, in the OR, or Finished.  But it’s the same place – and I’m sitting in the same seat that I always do while I’m here.  It’s not the room that makes this place feel awful, it’s the mood.  And that will never change.

We’re here together – Ellen, Gabriel, and I, and dealing with things together like we always do.  But we almost didn’t have Gabriel with us.  For some reason, we thought the stress, the long day – the unknown –  would be too much for him and we arranged for him to stay with Nanny while Ellen, Isaac, and I came on our own.  But it was also stressful to think about him being left alone and worrying about his brother, and wondering what was going on while we were away.  He woke up yesterday and told us he wanted to be there with us. He’s Isaac’s best friend – his support system, and we need to be here together.  I’m so glad he came, and watching the boys spend time together before the surgery was one of the loveliest things I’ve ever seen.

This is the place that parents of kids with MPS dread the most.  Surgeries are tough on kids, but made all the more difficult for our kids with MPS because of their comprised airway – airways that continue to deteriorate with each passing year.  Sitting here, I can’t help likening these frequent visits to Russian Roulette, a thought that’s been nagging at me for weeks now, ever since we got word that Isaac’s transplant was set for today.  It’s a grim thought – one that I don’t want to have and one that scares me.  How long until the chamber isn’t empty?  I don’t want to know.

We’re lucky, however.  More lucky than most parents in our position.  Isaac’s airway has been slowly rebuilding itself since we started him on Elmiron, the JnJ drug that we worked so hard for him to receive.  We know it’s doing wonders – his hands are straightening out, his spine is doing better, his joints are less stiff.  And his airway – it looks almost like a “normal” 10 year old airway now, something we could never have expected a few short years ago.

But that old familiar feeling of dread comes back to us all once we enter this room, once we sit and watch the door for our doctor to arrive.  I wondered aloud yesterday if this weakness of mine makes me less qualified to do the work I’m doing now on behalf of our kids throughout this country, whether this vulnerability or fear (or whatever you call it) makes me less able to support other families as they go through similar battles.  The answer came quickly, from a wonderful Mom who I’ve been lucky to get to know over the past few months.  Via text, she said:

“This makes you a great patient support person because you are honest enough to share your true emotions and know what a roller coaster ride it is. You are super human ; ) but you are human too.”

Those few sentences made me feel so much better about being afraid, and it’s comforted me as I sit and type away on our blog.  I should have told her that before making her read it here 😉  And she’s right…I am human.  And it’s OK to be afraid.

So far, it’s been an hour and a half since Isaac went back.  We have full trust in the man that’s looking after him right now – Dr. Cengiz Karsli, Isaac’s longtime Anesthesiologist (pictured below with Isaac this morning.)  We’re lucky to have him each time we go through this process, and it makes us feel a bit better knowing we’ve got the best person to care for our son.  We’re hopeful that we’ll win this round again, and the stress levels can come down a bit as we help our son heal.

I’ll update more on Isaac’s status as soon as I know more.  Thanks, as always, for your support.  It means the world to Ellen, Gabriel, Isaac, and I.

With Love,

A.

10409203_10155032960225291_4098629706121094658_n

Meeting With Shire – Update

flemmingHi Everyone,

It’s with a heavy heart, and with anger and frustration, that I update you on the meeting that took place this morning between the Fowler family, The Isaac Foundation, and Shire Pharmaceuticals.  The meeting was organized after Shire’s decision to deny Jack Fowler the life saving treatment he immediately requires.

This meeting was supposed to take place at the Fowler home, 45 minutes outside of the city of Chicago.  It was set to take place at 1:30 p.m.  However, a few days before the meeting, Shire’s CEO Flemming Ornskov abruptly changed the location of the meeting to the Chicago airport, and changed the time to an unseemly 7:30 am.  The Fowler family struggled to put child care in place.  And when you are dealing with a special-needs child, that is no easy task.

We made it to the meeting on time, and brought Jack in with us to meet with the Shire team.  Present members for Shire were CEO Flemming Ornskov and Head of Research and Development, Phil Vickers.

The Isaac Foundation began the meeting by thanking Shire for taking the time to meet with the Fowler family.  We expressed that the purpose of the meeting from our point of view was to discover how we could work collaboratively with Shire Pharmaceuticals so that we can find the best treatment options for Jack Fowler and in a timely fashion.  We expressed that if Shire was present to simply reiterate their position from December and deny Jack the treatment he needs, then the meeting would need to come to an abrupt end.  I made very clear to Mr. Ornskov one very simple fact – an immoral decision is still immoral, even if it’s delivered while looking us in the eye and said to our face.

Flemming looked at us and said “We are not changing our decision.  I guess this meeting is over.”  With that, the hopes of the Fowler family were dashed, and our hope to work together with Shire to save this little boy was ended.   We left a large print out of the 32,000 signatures that were signed in the online petition, as well as letters of support from a high percentage of the families currently participating in the clinical trial of the drug that Jack desperately needs.

As we were leaving, Jack walked around the table and gave Flemming a hug.  Close to tears, Jack’s mom said “If he could talk, he would be asking you to Be Brave, like your motto says, and save him.”  It was one of the most heartbreaking moments of my life – watching a sweet little boy who doesn’t have any idea what is going on give a hug to the man who just gave him a certain death sentence.  I told Flemming that I had a hard time understanding how he can go home and look his children in the face after that moment.  He just looked at us and said “It was nice to meet the family.”

The facts of this case remain the same, and are very clear.  Jack Fowler needs access to a drug that will save his life.  He easily qualifies for individual use access through the FDA’s Expanded Use guidelines.  It is those guidelines that decide whether any investigational drug is safe for use outside the bounds of a clinical trial.  The question of whether enough safety data exists to proceed or not doesn’t rest with Shire Pharmaceuticals, nor does it rest with any pharmaceutical undergoing the same process.  It rests with the FDA first and foremost, and it rests with the physician in charge of treating the patient.  All Shire has to do is begin the application process on Jack’s behalf and leave the decision to the FDA.  When I stated this very clearly to Mr. Ornskov and asked if he would submit the application, he flatly refused.

There are things in this world that many people would be better off not knowing.  What lurks in the minds of pharmaceutical decision makers should be at the top of everyone’s list.  To have the ability to provide help and support, to be able to save the life of a precious little boy, and then choose not to, shows a callous disregard toward life.  That callous disregard is a painful reminder of what Big Pharma is after – money, product, fortune, and fame.  Don’t ever be fooled that the patient comes first.  As Flemming so plainly stated before I gave my introduction – “We don’t work with patients.  We don’t work with families.  We are in the business of developing product.”

With that, there’s nothing left to be said.

Our press release goes out early this week.  Stay tuned on how you can help us #SaveJack.  We will never quit when the life of a child hangs in the balance.

Thank you for your ongoing and tremendous support.

With Love,

The Isaac Foundation

 

Direct from Shire's Phil Vickers

Hi Everyone,

As I work away and prep for Saturday’s meeting between the Fowler Family, The Isaac Foundation, and Shire’s CEO Flemming Ornskov and Head of Research and Development Phil Vickers, I was directed to this youtube video featuring Phil and a few other panelists.  While the discussion is interesting, it’s the end quotation from Mr. Vickers that struck me as ironic and, as it turns out, disingenuous based on Shire’s recent decision to deny treatment to Jack Fowler.

In the video, Mr. Vickers states:

We provide Hope to patients and their families.  And that’s a very sobering thing.  And I would say, the best times of parts of my jobs are meeting those families and some of those patients and seeing the impact we can have on their lives.  And some of my worst discussions are with those same families where, there’s somebody that – you know you have to have specific enrollment criteria so you can have a successful study.  It’s very tough when somebody has a child that’s outside those enrollment criteria, that may have advanced so far that the chances of them getting benefit are very, very low, and you cannot compromise your study, and you have to say that to a parent.  It’s a very, very tough thing to do.  And sometimes you can’t even provide therapy, in some cases, outside of the clinical trial because you’ve got no evidence of safety and you’ve got no evidence of clinical benefits, and that’s a very, very tough discussion to have.

We are proud of our early access programs.  Those are very important.  And at that time, you do have a sense…more than a sense…you know the safety and the efficacy issues…

Phil Vickers – ‪Rare disease clinical trials with Shire, Novartis and more at World Orphan Drug Congress USA 2013

Thus far, I’ve not seen the Hope that Shire says they provide patients.  I’ve not seen them live up to their motto of “being as brave as those we treat.”  I’ve seen only a callous disregard for the life of a little boy they know they can save, and I’ve seen them ignore the telephone calls and the emails they have received, by the hundreds and thousands, asking for an explanation of their decision.

Mr. Vickers says that he is “proud of our early access programs.”  In reality, Shire doesn’t have one.  We requested the criteria that patients must meet in order to participate in any early access program with the company.  They didn’t have criteria.  In fact, they only started working on one once Jack’s case brought to light the glaring problems that a company faces without such a policy and criteria.

In the video, Mr. Vickers expresses that you have to know the safety and efficacy issues involved before opening up any compassionate or expanded access program.  In this case, we do know!  The trial has been going on for over 3 years and no adverse affects have been reported.  We have letters from over 1/3 of the trail participants expressing their support for Jack and describing how incredible the treatment has been for their children.  It’s been a lifesaver, and Jack needs his life saved.  He qualifies to be saved under the FDA’s guidelines for Compassionate Use (read here).  In most other pharmaceutical companies, Jack would qualify under their program as well.  

I hold out hope that Saturday’s meeting brings a change of heart by Shire Pharmaceuticals.  Everything is in place to save Jack.  We have a physician eager to treat him, we have a site lined up and preliminary review board approval.  We have funding to ensure everything is done safely and in Jack’s best interest.  We have the support of thousands and thousands of people throughout the world – indeed, over 31,000 people signed THIS PETITION demanding that Shire #SaveJack!  We’ve had extensive media interest in this story, and we’ve held off taking this public through such a media campaign until we’ve learned the outcome of Saturday’s meeting.

In essence – we have everything we need to Save Jack – except Shire.  And without Shire leading the way, without Shire fulfilling it’s stated creedo of “being as brave as the people we treat,” Jack will die.

I’ll update as soon as we know more.  For now, here’s some thoughts directly from Phil Vickers himself.  The quotes from above begin at 32 mins and last until the end of the clip.

Thanks for the continued support.

With Love,

The Isaac Foundation