Linear scleroderma is a rare chronic autoimmune disease that affects children and has no cure. It is characterized by hardening of the skin on the face or localized to a single extremity of the body. It can cause mild to severe disfigurement. Being diagnosed with a chronic disease like this is life changing to these children and their families. In Jericho alone, we have three children that have been diagnosed with this challenging and elusive disease.
Last year, A Lasting Mark was formed. We are a 501c charity. Our sole purpose is to raise monies for finding a cure and understanding the cause of this rare and underfunded disease. With the help of our community last year, we were able to donate $100,000 to Dr. Thomas J.A. Lehman, Chief of pediatric rheumatology at the Hospital for Special Surgery.
Lehman and his team would not have been able to launch this study without the generosity and support of our communities.
Please help us in continuing our quest of making a difference for our Jericho children and others by keeping this research going. This year on Sept. 12, from 9 a.m. to 4 p.m., we will be having a family fundraising event, Lamapalooza. Join us at the Long Island Sports Hub, 165 Eileen Way in Syosset, for a fun family charity kickball tournament. We will have tournaments in four age brackets—elementary school, middle school, high school and adult. There will be prizes for all winners. It will be a great community day of kickball, food, prizes, raffles and a DJ.
Please put together a team, choose a captain, name your team and come play. Two to three games are guaranteed for each team.
If kickball is not your fancy, please come down to watch and support your friends. We have sponsorship opportunities available and our goal is to raise $50,000 that day.
To register, go online at www.alastingmark.com. For further information, contact Marybeth Medolla at www.alastingmark@gmail.com.
—Submitted by Marybeth Medolla
