March 27, 2013 mcfadyena

MPS II Research Fund Update

MPS II LogoDear MPS II Research Fund Supporters,
It has been almost a year and a half since our last major fundraiser for the MPS II Research Fund. A year and a half ago, at the time of our Once Upon a Cure Gala in September 2011, our family and our fund were in the midst of major changes, and I have waited until we knew what was going on, to be in touch with you again.
As many of you who read this blog know, in August 2011 Trey qualified for an intrathecal (IT) clinical trial at the University of North Carolina (UNC), where the enzyme he is missing is injected into his central nervous system. Since February 2007, Trey has been receiving a weekly four-hour intravenous (IV) Enzyme Replacement Therapy (ERT) called Elaprase that infuses the enzyme he is missing into his body, however, due to the size of the protein, IV Elaprase cannot cross the blood brain barrier and thus cannot prevent his progressive brain decline.
Trey began monthly IT doses, injected into his central nervous system via lumbar puncture, at UNC in October 2011 and for the first six months of the trial, Trey, Ryan and I spent ten days per month at UNC, while the rest of the family (Avery and Sadie) remained at home. From month seven onwards we have only had to travel four to five days/month. While the shorter trips have been far easier, they remain incredibly time consuming emotionally, medically, and logistically. Fortunately, our family, friends, neighbors, and community have been amazing, joining us on trips to UNC to help, staying days and nights at our house looking after Avery and Sadie, driving them to activities, and more. Also fortunately, this trial has proven to be beyond our wildest dreams, making all the work so incredibly worth it. Trey is stable. Not only is he no longer declining cognitively, but he is also learning again and he is able to continue to participate in activities such as art class, community soccer and baseball, activities that he otherwise would have lost the skills, ability, and attention for. It is our hope that in the near future we will be able to receive these IT doses in Vancouver at BC Children’s Hospital and only travel to UNC every six months for assessments.
A year and a half ago, we were also made aware that The Canadian MPS Society might increase administration fees for the MPS II Research Fund. The Board of Directors has made a final decision regarding the fee, and as of March 31, 2013, administration fees for the MPS II Research Fund will increase from 5-20%. On our own, operating costs and administration fees are not 20%, they are not even 5%, but because when we began the fund we wanted to share in a united front with The MPS Society, we agreed to 5%. The Society does, after all, have costs such as renting office space, paying employees, etcetera, however, with the jump from 5-20%, Ryan and I no longer feel it is in the MPS II Research Fund’s best interests to remain with the Society.
After looking into our options, we have decided to join forces with another registered Canadian charity called The Isaac Foundation for MPS Treatment and Research (charity number: 806 930 079 RR0001).  Isaac is an eight year-old boy, like Trey, who only months before Trey’s diagnosis of MPS II, was diagnosed with MPS VI. Similar to our journey in British Columbia, Isaac’s parents, Andrew and Ellen McFadyen, were forced to fight the Ontario government for the first ever ERT for MPS VI, Naglazyme. Also similar to our story, Andrew and Ellen were driven to fund research for a cure. As a result of this drive, they began The Isaac Foundation. Over the years, we have become close with Andrew and Ellen, not only because of the similarity of our situations, but because we share similar values, beliefs, and we will not rest until we find a cure.
Andrew and Ellen have worked tirelessly for a cure for MPS, holding yearly galas, golf tournaments, and other fundraisers. They have done such good work raising money and finding solid research to fund, that the project they are and have been funding for the past series of years is getting close to entering human clinical trials in MPS.  It is a very exciting time for The Isaac Foundation.
Andrew and Ellen have welcomed us into the arms of The Isaac Foundation. We have opened an MPS II Research Fund within the Isaac Foundation, much like we had an MPS II Research Fund within the Canadian MPS Society. The difference is that instead of donations going to MPS II research within The Canadian MPS Society, donations will go to MPS II research within The Isaac Foundation. Another difference, a GREAT one, is that we will not be charged administration fees aside from the 4% that Canada Helps (the online donation platform) charges upon each online donation, or the 15 cent fee charged to issue your receipt if your donation comes in via cheque or cash.  Your donations are going to fund research, alone.
At this time, while we continue to travel monthly to UNC as part of the clinical trial, we are not organizing any large fundraisers, but your donations are welcome at any time, and we will be in touch as soon as we begin organizing another fundraiser. This is an exciting time in the scientific community, with many treatments on the horizon, so there is no shortage of research to fund.
In terms of logistics, you can donate:
Online at: or where you will be linked to Canada Helps (choose the MPS II Research Fund from the drop down option), or
By mail: You can mail a cheque to The Isaac Foundation MPS II Research Fund, at: 1449 Chamberlain Dr. North Vancouver, BC, V7K 1P8.
A tax receipt will be issued for all donations over $15.
We are grateful to The Canadian MPS Society for supporting our Fund for the past seven years, and we will continue to support them by attending their fundraisers and subscribing to their quarterly publications, but it is time for our fund to move on. Ryan and I are excited about our future with The Isaac Foundation and continuing our work to find a cure for Trey, Isaac, and all kids with MPS. Rest assured that Andrew, Ellen, and The Isaac Foundation are as invested and passionate about finding a cure as we are.
If you have any questions, please do not hesitate to email me at: or call me at: 604-317-3911. This is a big change for us, but a worthwhile one. I look forward to hearing from you and seeing you again soon. For updates on Trey and our MPS II Research Fund, you can visit: and to read more about The Isaac Foundation, you can visit them at:
With gratitude for your continued support,
Deb and Ryan Purcell


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!