Jean-François Aublet | Director, MPS IIJean-François is the proud dad of six year old Félix-Antoine, who is unfortunately affected by Hunter Syndrome (MPS II). JF is a biologist and works as an Environmental Emergency officer with the National Environmental Emergencies Centre of Environment and Climate Change Canada in Montreal (QC). He never imagined that his undergraduate biochemistry and genetic courses would have served him the way it did… After reaching out to Deb Purcell (fellow board member and MPS II mom) in the early days of Félix-Antoine’s diagnosis in 2015, she introduced JF and his wife, Édith, to The Isaac Foundation and Andrew McFadyen. It did not take long before he knew he had found a second family. A family that knew, that listened, and that has been working hard to find a cure to MPS. Hence, this is why he joined the board of The Isaac Foundation, trying to make a difference for kids with MPS, to feel empowered, and to be a proud representative of the “TIF – French connection Quebec chapter,” along with Édith!
Ellen Buck-McFadyen | Director, MPS VIEllen Buck-McFadyen (RN, PhD) is a registered nurse and full-time professor at Trent University in the nursing program. She is also the mother of Isaac McFadyen – who has MPS VI – and his younger brother Gabriel. Ellen and her husband Andrew co-founded The Isaac Foundation shortly after Isaac’s diagnosis in 2006. She tries to stay on top of research in the area of MPS diseases and also conducts her own research on rural health and the social determinants of health. Ellen doesn’t have much time for hobbies but loves to travel and most recently was fortunate enough to spend several months living in Italy while Isaac participated in a gene therapy clinical trial in 2018/19.
Alexandra Hall | Director, OutreachAlix is a Managing Director at The Isaac Foundation and Equal Access for Rare Disorders where her work focuses on advocating for patients’ safe and ethical access to treatment, patient education, and awareness programs. She oversees the Patient Support Program, providing individualized support to patients and their families. She has a background in education, community engagement and outreach.
Kristin Higginson | Director, MPS IIKristin Higginson is a mother to two boys, Jack and Owen. Jack was diagnosed with MPS Type II at three and a half years of age. Shortly after diagnosis, Kristin and her husband Ben connected with The Isaac Foundation for support and guidance. Kristin is an IT Business Analyst and works and lives in Lakefield Ontario. She loves to spend her downtime surrounded by her family and friends.
Édith Lacroix | Director, MPS IIÉdith Lacroix is the proud mother of Félix-Antoine, who turned six years old this past June. She is a biologist and works for Environment and Climate Change Canada in Montreal (QC) as a Biomonitoring Specialist, where she coordinates a biomonitoring program aimed to assessing the health of aquatic ecosystems with the macroinvertebrates (organisms that live on the bottom of rivers). Along with Jean-François, she became involved with The Isaac Foundation a few months after they received the diagnosis of Hunter Syndrome for Félix-Antoine, back in summer 2015. During this devastating period, they reached out to the Foundation and knew this would be a new family with whom they will fight to find the cure to Hunter Syndrome! Édith and Jean-François organized their first Run for a Cure in 2016 to raise awareness and funds for a cure and since then – and as a member of The Isaac Foundation – she started to feel we have the power to save our kids, and that together, we are stronger! So she proudly joined the Administrative Board of the Foundation and is committed to making it shine, as well as raising awareness for MPS diseases, particularly in Québec.
Pam More | Director, MPS VIPam has been involved with The Isaac Foundation since her youngest son was diagnosed with MPS VI in 2011. Pam lives in rural Southwestern Ontario in the small town of Palmerston with her 3 children Daphnie, Clayton and Jasper. Since coming on board with The Isaac Foundation fundraising for research has always been a family commitment. Pam graduated from the University of Guelph with her Bachelor of Commerce and works in the area of Finance for an automotive and electrical supply company. Her husband Darren was also a Board Member until his sudden passing in 2018.
Deb Purcell | Director, MPS IIDeb Purcell is mother to five incredible kids: Trey, Avery, Sadie, Raleigh and Cora. Deb’s eldest son Trey was diagnosed with MPS II on February 14, 2006. The first year after diagnosis felt unreal. Grieving lost hopes and dreams, creating new ones. Realizing that Trey wasn’t any different the day before diagnosis then after. Part of that first year was spent grieving, part fighting for access to MPS II’s first and only Enzyme Replacement Therapy- Elaprase, and part figuring out how to save Trey’s life and discover hope, which is where The Isaac Foundation comes in. Isaac is Trey’s age and was diagnosed just months before Trey. Upon meeting the McFadyens in the summer of 2006, the Purcell’s knew they were family. Although the MPS II Research Fund didn’t begin with The Isaac Foundation, it was meant to be a part of it, so The Isaac Foundation is where the MPS II Research Fund eventually landed- home. Since 2006, with the support of many family, friends and community members, the MPS II Research Fund has raised over half a million dollars. In 2011, Trey qualified for a clinical intrathecal trial that injects the missing enzyme in MPS II directly in the central nervous system. Trey has been receiving that treatment monthly since then, which is keeping him stable, with a good quality of life. Deb is so grateful for the family she has found at The Isaac Foundation. A group of people who are driven to save their children’s lives and find cures for MPS, a group of people who are full of hope, and a group of people who will drop everything to support each other in the hardest of times. It is the best kind of family one could find.
Ashlee Rathwell | Director, MPS VIAshlee resides along the beautiful Ottawa River in Renfrew, ON (a small town 45 minutes from Ottawa) where she works in the Social Services Department for the County of Renfrew. Helping people is her passion. She is the proud mom of two happy and busy little girls, Paislee and Brooklyn and is happily married to Scott Rathwell. Ashlee has had a strong connection to the MPS community for as long as she can remember as her late brother, Justin, had MPS VI. Ashlee is also a carrier of MPS VI. Ashlee has volunteered, spoken and attended conferences in Orangeville, Minneapolis, Toronto and Cobourg. Ashlee remains committed to assisting The Isaac Foundation in their fundraising efforts to find a cure!
Courtney Redmond | Director, MPS IICourtney is a mother of two energetic, lovely little girls, Rory and Abigail and is married to Patrick Redmond. Courtney and her family live in Peterborough, Ontario having moved back to Peterborough from Cornwall shortly after her nephew Jack was diagnosed with MPS II. Following Jack’s diagnosis, Courtney, along with her family and friends took an active role in fundraising for a cure for MPS II as well as advocating for children with rare diseases, such as her nephew. Courtney works as a supervisor with the Ministry of the Environment, Conservation and Parks in Peterborough and enjoys spending her personal time with her family.
Parise Robichaud | Director, MPS VIParise lives in a beautiful little community in Grande-Digue, NB but born in Richibouctou-Village, NB. She graduated from Université de Moncton with an Education degree, and now teaches physical education to elementary school students, from kindergarten to grade 8th students. She’s even back in the gymnasium in the evenings to play volleyball or to do Zumba classes with her daughter, Kamie who loves to dance!
After her daughter, Kamie, was diagnosed with MPS VI in 2015, Parise discovered The Isaac Foundation, and they helped provide her and her family with hope and love. She decided to give back by starting an annual fundraiser in her home town every year, hosting a co-ed softball tournament. Over $20,000 has been raised so far. Beside running around hospital hallways for numerous doctor appointments, Parise also enjoys the outdoors by making beautiful memories with friends and family by going camping in the summer and playing softball with her husband. She tries to make lots of beautiful memories every day.
Dane Sadownyk | Director, MPS VIDane is proud to be part of The Isaac Foundation since his daughter, Aleena’s diagnosis in 2013. During that time, The Isaac Foundation was pivotal in supporting Dane’s family in securing treatment for Aleena. Dane has since become a Board Member and helps to support the decision-making process towards finding a cure for MPS VI. In addition to being a board member, Dane serves as an Administrator of specialized educational programming. Dane is also an Educational Technology Consultant and is a past international presenter and featured local speaker with a passion for supporting children with special needs using assistive technologies.