About Fundraiser in Support of Nemaline Myopathy Type 2 Research
As you likely know, I am raising funds in support of life saving research for an ultra rare neuromuscular condition that disproportionately affects Ashkenazi Jews, including my son, Ethan.
The condition is called Nemaline Rod Myopathy (Type 2). It impacts all of the affected person's muscles (including the muscles needed for breathing and eating). My son is dependent on a feeding tube and a ventilator. When he gets a cold it can be life threatening - in the last two years we have had more than 2 dozen admissions to the ICU at the Hospital for Sick Children. Most kids with this condition don't make it past 2 years of age. Ethan is nearly 3 now - he's a fighter.
Ethan's doctor, Dr. James Dowling is conducting research that we anticipate will result in 2 possible treatments. Having dedicated nearly his entire career to finding a cure for NM, Dr. Dowling and his team appear to be about three years away from human clinical trials. The personalized genetic therapies he is developing are not only expected to reverse symptoms of NM but are also expected to treat possibly hundreds of other genetic disorders for which there are currently no available treatments. Accordingly, completion of this research and its translation into treatment would actually be revolutionary in the field of genetics.
At this time, the only thing holding Dr. Dowling back from completing the research is funding.
If you have reached this page I wish to thank you for taking the time to learn about Nemaline Myopathy, living with the condition, and the incredible work being done to cure this debilitating disorder. If you choose to support this campaign please know that you will not only be helping us change Ethan's life, but possibly the lives of millions living with untreatable genetic disorders.
Thank you for your support!
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TIP: Did you know you can also add a pre-recorded or live stream video to this section? Just provide the full iframe code in the admin view under Configure Campaign > Design > Basic Design.
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Thank you!
BATHURST MANOR COMMUNITY STREETS SALE
The First Annual Bathurst Manor Community Street Sale in support of research to cure nemaline myopathy was a tremendous success. It brought the community together, raised tremendous awareness with folks who had never before heard of Nemaline Myopathy and raised over $14,000 towards this vital research. Stay tuned for next year's event which will be bigger and better! Plans are already in the works so mark your calendars for July 6th because its going to be an amazing day!
