Fundraiser for SMS (Smith-Magenis-Syndrome)
Emil, our amazing little boy, has SMS. Smith-Magenis-Syndrome is a rare genetic disorder that is not well known. SMS impacts all aspects of development: intellectual, behavioural and physical.
So raising awareness (and funds) for this rare disorder is a very personal matter for us, it's even more impactful as we can make inroads not only on SMS but also on most neuro-behavioural diseases.
Like many genetic disorders SMS isn’t curable right now. However amazing scientists like Dr. Wei-Hsiang Huang at the McGill General Hospital (MGH) Brain Research and Integrative Neuroscience (BRaIN) Program are researching SMS in hopes of making strides to overcome its symptoms and move towards a cure.
Christine and I have had the chance to meet with Dr. Wei-Hsiang and visit the MGH installations hosting his research. The strides that he and his team have made in a short time are nothing short of amazing and are very promising in our humble opinion.
We are asking you to help us to support his research, as while it may focus on SMS its applications and implications will impact other Neurobehavioral disorders and illnesses.
We have personally committed $25,000 per year for the next 5 years to support his research (this is year #2 of our contribution) and we hope that you can join us to raise at least an equivalent amount yearly.
You can donate directly on this page.
Thank you for your generosity.
Christine & Etienne
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