Run For A Cure – Training

It’s 6 days until race day, and I was starting to feel poorly that my official run next week wasn’t going to be dedicated to our MPS VI crew. So – I rectified that this morning and did a 1/2 marathon for training! This one is for all the MPS VI kids I’ve been lucky enough to help in this country (Isaac, Jasper, Violet, Aleena, and Kamie) and for the incredible kids I’ve been lucky enough to follow along and watch their journey from the start (Lillian and Holden). This run is also for the MPS VI families I’ve been fortunate to know online, to the families who have helped us along with whatever battle we’ve been fighting (Ethan and Frida). And finally, this one is for you Kendra – a hero who led the way for our kids to get the treatment they need approved during the clinical trials.

Today’s run was a good one to dedicate to my fellow MPS VI families – it’s the first one since I returned back from New Orleans, the first on since we received our update on the Gene Therapy project we’ve given over $1/4 million towards and get it off the ground. I’m still waiting for permission to share the news we received on where things stand, but what I can say is that I truly believe we’ve moved on from HOPE to HERE. Everything we’ve worked so hard to see happen is now upon us, and I’m waiting with anticipation to share everything with you as soon as I can!

Working to bring ERT to Canada for our kids was tough. I lost a lot of sleep fighting for Isaac, Jasper, Violet, Aleena, and Kamie, and I lost a lot of time away from my kids during the busiest moments of those battles. I’m so very lucky to have played a small role in helping you all have the chance at life you deserve. Knowing you these kids has changed my life, and I’m a better person for it.

At the same time, I’ll never forget the moment I had to tell Isaac I couldn’t spend any time with him – time I had promised was his – because I was working on a media campaign to help Aleena get the treatment she needed. Isaac looked me in the eyes, ran over and hugged me and said “It’s OK, Daddy. You’re working to save her like you did me and I understand.” It was one of the most heartbreaking and sweetest moments of our time together, but it made me realize that I needed to make some changes in my life and ensure that I could do both. It’s one of the things that helped me make the final decision to leave my classroom and focus full time on finding a cure for our kids because if we find that cure, all of our battles will be over.

And I think we’re close. No – I KNOW we’re close. And thinking of all of you during my run today made it easy out there, even though I was running through our cottage roads and up and down hills for the majority of my time running.

Our RUN FOR A REASON event has raised over $300,000 over the past 10 years – money that we’ve sent directly toward finding a cure for our kids. It’s fitting that this 10th anniversary run is one that takes place while we’re on the cusp of finding that cure for our kids, and I can’t wait to get out there next weekend and celebrate on the course.

I’m incredibly blessed to have all of you in my life. Thank you for enriching my life the way you have. I wouldn’t be the same without you.

If anyone out there would like to support our Run – our Hope for a cure – please click through and spare what you can.…

Run For A Cure – For Ellen

We’ve run a lot of places together, Ellen and I, and I can’t imagine a better partner to be at my side on this long road than you.

Our latest journey has taken us to New Orleans, to the American Society of Gene Therapy Conference, as we search for a cure for our son and all the other families battling MPS throughout the world. This training run took me through the streets of NOLA, out past the insanity that is Bourbon Street and through the historic French Quarter. It started out as a short run, but kept getting longer and longer as I thought about the significance of our trip here – someone at this conference holds the future of our son in their mind, in their lab. We need to find them, fund them, and make our cure a reality.

Ellen is my partner in life, my best friend, the mother of my kids, and the strongest person I’ve ever known. She’s the reason why our Foundation has grown, why we’ve been able to achieve what we have and help the kids we’ve been so lucky to help. She’s the person I laugh with, cry with, grieve with, and the only person I can talk to about anything.

It sometimes gets hard to talk about my own son with other families – I’m still coping with diagnosis, still in disbelief that this is where our life has taken us. But running The Isaac Foundation sometimes makes me feel I have to be strong for the other families out there, which usually means I hide the fear I have inside about where my own journey with MPS will take me. I’m lucky to have Ellen with me to talk to, share those fears, and to help me see how close we are to winning our fight.

I’d like to say that my final run on Race Day is for Ellen, but that race and that run is reserved for someone else. She’ll have to be content with this run being for her – the one through the streets of New Orleans while we are on our latest journey together – an important one toward finding the cure for our son.
I love you, Ellen. More than ever before.

If anyone out there would like to support our Run – our Hope for a cure – please click through and spare what you can.…

Run For a Cure – Training Run For Deb

This long run is for you Deb, and for you, Trey. 16K is a long training run, but thinking of your family and thinking of the journey we’ve been on together got me through it all. Our kids were diagnosed at the same time, and you were the first family we met after that diagnosis took us down paths we never knew we would take. I’ve watched you worry over Trey, cope with horrific news, and then fight like hell to change the world for him.

And you have. And I couldn’t be more proud to know you; I couldn’t be more proud to have you on our team, side by side.

Much like our battle with MPS, my run today felt like every step was uphill. It felt like I would never make it to the end. But also like MPS, I know we’re near the top of that hill, and the run back down toward the finish line will be easier and faster. We’ll get to that finish line for our kids. We’ll get there soon, and we’ll get there together.

Thanks for continuing to inspire us. Send my love to your family.

If anyone out there would like to support our Run – our Hope for a cure – please click through and spare what you can.…

Run for a Cure – Training – Ontario

Today’s short and slow run took me through the streets of downtown Toronto, and past the Ontario Legislature. I used to think that real change happened in that building – then my son was diagnosed with a rare disease. Suddenly, it became evident that we have a health care system that touts itself as the best system in the world, but only if you don’t need access to expensive medicines to stay alive. It dawned on me early in this battle that real change doesn’t happen in that Legislature or by the people elected to work there – it comes from us. It comes from the people who need it most.

Had we not worked so hard to change public policy, the people in that Legislature would have sat back and watched our son die. Same holds true for the other kids diagnosed with MPS in this Province. The people in that Legislature believe that treating symptoms is better than treating the disease – because it’s cheaper to do so and helps to keep their budgets in check. But tough action, determination, and a brave fight by our kids and families has helped ensure access for many who need it. There is a new battle brewing, one that will take place in the very near future – a battle for access to treatment for our MPS VIA kids. I’ll be there to lead the charge because I believe in a health care system that is fair and equitable for everyone – even if you happen to have a rare disease, even if you need access to an expensive medicine to stay alive.

So – this warm up run is dedicated to the incredibly brave families I’ve met here in Ontario, and to the patients who are the bravest of all. I’m so lucky to know you and I’ll be running for you in Ottawa. This is for Isaac, Jasper, Lillian, Jack, Avery, Luke, Zane, Derric, Dawn, Riley, Tyler, Jordan, and Ayub!

Run For a Cure – For Jack Higginson

This warm-up run is dedicated to Jack Higginson, a sweet little boy battling MPS II. This run was a little longer, and a bit more difficult. But thinking of the pain and heartbreak Jack and his family suffer through day in and day out as they battle this disease gave me the motivation to keep going and finish strong.
Families dealing with the diagnosis of MPS II have the double agony of diagnosis coupled with the excruciating wait until age 6 or 7, an age where they will know whether their child is battling cognitive impairment as a result of the disease. 

MPS is a tough battle, and the strength, courage, and determination it takes to battle through a diagnosis of Hunter Syndrome is something that only the strongest people can undertake. Jack’s family have been incredible advocates and fighters for our kids – the strongest people I know. They are kind, caring, and compassionate, and will be a big reason why we find a cure for Hunter Syndrome! This one was for you, Jack. And for you lovely Higginsons! See you on race day!