Scarsdale Mom Asks For Your Help to Cure Juvenile Dermatomyostis

This letter was written by Scarsdale resident Nikki Hahn:

As many of you know, my daughter, Addie suffers from a rare and life-threatening disease called Juvenile Dermatomyositis. Since diagnosis 7 years ago, Addie has endured monthly 12-hour infusions, high doses of steroids, low dose chemotherapy medication, and a multitude of side effects that, unfortunately, accompany those treatments. Ironically - today is infusion day for Addie.

The pandemic had a negative impact on our fundraising so we need your help now more than ever - we have an opportunity to fund a clinical trial for a steroid replacement drug, Vamaorolone. It's a drug that acts as a steroid but without debilitating side effects. Please consider making a donation to make this research possible!

Cure JM is the only organization committed to funding research for better treatments and ultimately a cure for JM. We also provide family education, support, and advocacy. I am proud to be a member of the Board of Directors, Co-Chair of the Development Committee, and President of the National Foundation. It is an honor and a duty; I simply don’t want other kids to go through what Addie HahnAddie has been through.

I hope you'll join us Friday at our home at 5 pm for a short walk to raise funds for a cure! Email me at [email protected] for the address.

Please help me fund more research so we can find a cure and give kids like Addie hope for a brighter future!

Donations can be made here:

A $25 donation gets you a piece of Cure JM swag!