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Desperation, Hope and a Plea
I’m going to keep this post short and to the point because I need your attention now more than ever. In fact, I need your help.
A few weeks ago, I attended the 5th annual Neuromuscular Disease Foundation symposium, which brought together patients and scientists from around the world.
It gets harder for me to attend every year. I am no longer the least progressed patient in the room. I see patients who can still walk without leg braces or a cane and I search for vestiges of my former body in theirs. I instead recognize my body and its awkward movements in those of patients farther along. I see my emaciated forearms. And then I am surprised to see upper arms on other patients that have also wasted away. I see the fate that may await me as I watch caretakers, spouses, and parents assist their loved ones- adjusting their eye glasses, feeding them lunch, draping sweaters over their shoulders.
For the first time in 13 years, I looked around the room and started to feel defeated in the battle against this disease. Until Lalé Walsh, the executive director of the NDF, made this announcement:
A private foundation has generously offered the NDF a $2.5 million matching grant to fund gene therapy. Gene therapy is the most promising treatment at this time. Gene therapy offers more than just the potential to slow down progression. It offers us a chance to stop it. A chance to be lucky enough to remain as disabled as we are. It may even allow for mild improvement.
We need to raise $1 million by the end of 2018 in order to receive any of the grant money. That is a daunting number and I do believe we can do it. For patients like me, for our children and loved ones and for our community at large.
Please consider buying a ticket to the “Gala for the Arts“ on Sunday night, November 11th at the Skirball cultural center. Invite others to attend. There will be a paddle raise and an opportunity to donate in person there. You can also donate by clicking the link below. Every amount matters.
I truly hate how becoming disabled has forced me to ask for help on a daily basis, both from loved ones and total strangers. It is uncomfortable and yet, I have no choice. This feels like one of those times when I have no choice but to ask. I will tolerate any level of discomfort to not lose this opportunity.
I am counting on your generosity to make this happen. Thank you for your support. It means everything.