Positive Altitude

Join Us on Saturday, December 9th, 10:00 AM-12:00 PM – Central Park Reservoir Loop. Walk followed by a New York nosh reception.

Background
It all started in March 2022, in Deer Valley, Utah (altitude 8,000 feet), where during Daisy’s spring break we noticed a reduction in my dystonia symptoms: my toes were uncurled and uncrossed, my foot was flat on the floor, and I was standing straighter. Because I was somehow spasming less, I was in less pain and thereby less fatigued. This meant I could do more! A Google search led us to think my improvements could be related to the high altitude we were at, a theory that my doctors agreed could be possible. Dan immediately started researching equipment that would simulate the reduced oxygen conditions at high altitude. He found the tent I’ve been sleeping in ever since and the generator that goes with it. My actual equipment is made for endurance athletes and mountaineers (aka the anti-me). This strange set-up has enabled me to do so many firsts and so many things I hadn’t done in so long. I’ve attended a Broadway show with Daisy, chaperoned a class trip across the Brooklyn Bridge, cheered on the NY Liberty from a seat in the stadium, sang along with Bruce Springsteen at a concert, and danced the hora at a family Bat Mitzvah in Israel — to name a few highlights. To be clear I still have dystonia. The tent set-up or high altitude is not a cure. But, gosh it is something big. Not since I underwent Deep Brain Simulation (DBS) surgery 11 years ago this month has my life changed so much for the better because of a “treatment.”

The Study
While I was camping out at home, the Dystonia Medical Research Foundation (DMRF), the 501(c)(3) nonprofit on whose board my dad and I sit, assembled an international team of fascinated, brilliant doctors eager to study the phenomenon. Their efforts are about to take a huge leap forward: a multi-stage study to be conducted at the University of Colorado’s lab where altitude conditions can be simulated while loads of tests are conducted. A team comprised of neurologists, physiologists, videographers, and technicians will all be present for this double-blind study. For Phase One, there’s only one participant: ME! On November 11th, I flew out west to take the first step in the study, which has been fully funded by the Dorothy and Murray Feiss Family Foundation, my family’s foundation. It’s all so real and exciting. While I may be the study’s first subject this is so much larger than me. The doctors believe their findings and proof of concept will hold great promise for the Dystonia Community, as well as possibly the Parkinson’s Community. Pinch me!

The Event
Over the last decade, you have taken so many steps with me on this journey, enabling us to raise over $500,000 for major dystonia research. It has been several years since I’ve sought your support, but I believe NOW is the time and THIS is the study. Today, I humbly ask you to take this next step with me by joining or donating to the Inaugural Positive Altitude Run/Walk at the Central Park Reservoir on Saturday, December 9th. There will be fun activities for the kids, cool prizes, an awesome raffle, and a post-event gathering at our home where I will be sharing details from my recent trip for the study’s phase one. All funds raised will be restricted to the ongoing research study described above into the effects of high altitude on dystonia. 

We cannot wait to gather with our spectators, runners, joggers, and walkers of all ages to raise awareness and research funds. See you on the track!  

About Dystonia
Dystonia is a rare, debilitating neurological movement disorder that causes excessive, involuntary muscle contractions. These muscle contractions result in abnormal, painful muscle movements and body postures, making it difficult for individuals to control their movements. There are an estimated 300,000 children and adults in the United States living with dystonia. There are limited treatments and no cure (yet).

Note: Photos above were taken in Colorado at 12,095 feet and 11,200 feet, respectively. 

Thank you Donors!