Highlights:

- FD Awareness Day in NY & PA
- FD Gene Challenge Rebuked
- New Research Publications
- Philadelphia Bike/Walk Event
- 26th Annual FD Day
- FD Golf Outings
- 6th Annual FD Bowlathon
- Natalie's FD Softball Palooza
- Nicole's FD Bracelets
- Yeshiva University FD Article
 

While researchers funded by the Dysautonomia Foundation work to discover new FD therapies and develop a better understanding of the genetic basis of FD, other researchers  have spent significant sums of money trying to gain control and ownership of past discoveries.

"One can only wonder why any researcher would want to spend precious funds on legal battles over ownership of intellectual property, rather than on research that can lead to a better life for people with FD," remarked David Brenner, Executive Director of the Dysautonomia Foundation.

The Dysautonomia Foundation, which funded the discovery of the FD gene, has an exclusive license to the intellectual property that has enabled  FD genetic therapies and carrier screening. The Foundation's policy is to allow all researchers and all nonprofit organizations to freely use the FD gene for any FD-related research, treatment and screening programs.

A US District Court judge ruled in favor of MGH researchers Dr. Susan Slaugenhaupt and Dr. James Gusella, and rejected the third attempt by Fordham  researchers Rubin and Anderson to be credited with discovery of the FD gene.  The MGH researchers were granted patents for the FD Gene in 2008, and the Fordham researchers have repeatedly sought control over that patent.

"This represents a huge victory for the FD community, insuring that FD families can protect the free use of the FD gene and prevent anyone else from commercializing it or with­holding it from fair use," added Brenner.

"We are concerned that researchers or companies that seek control over genes, as in the Canavan or  breast cancer cases, do so in order to make a profit or prevent others from working on treatments. We simply won't allow that to be the case for FD."

On Sunday, April 10th, the Philadelphia Chapter of the Dysautonomia Foundation was host to an amazing event that drew over 300 participants and raised over $145,000 for FD research and treatment.
  

The Path To The Cure FD Bike/Walk Tour, organized by co-chairs Rabbi Larry Sernovitz and Cindy Singer, was held in Abington, Pennsylvania. See our web site for pictures and details.   more

Our two annual FD golf outings are about to take place. With a little bit of luck, we'll have great weather and everyone on hand will have a great time, as usual.

The 15th Annual FD Golf Classic in NY will take place in Old Westbury at the Glen Oaks Club on May 23rd.

The 8th Annual FD Golf Classic in Chicago will take place at Briarwood Country Club in Deerfield on July 25th.

Both events include a great day of golf, along with auctions, raffles, cocktails and dinner. Visit our web site to participate in or sponsor the events.

You can find a full list of upcoming events  here.

On Sunday, March 17th, the 6th Annual FD Bowlathon took place at Woodmere Lanes in Woodmere, NY. With the participation of 100 bowlers and their families this event raised $30,000 for FD treatment and research.

Lexi Sirota and Ally Kaplan, along with their families, organized the event in honor of their cousin, Scott Fass.

Two States Proclaim FD Day:
New York and Pennsylvania Recognize
Importance of FD Awareness

Legislators from two of the states with the largest FD populations formally recognized the importance of FD awareness and the need for FD carrier screening. The New York State Senate and Assembly declared February 28th "Familial Dysautonomia Awareness Day" and the Pennsylvania House of Representatives declared April 10th "FD Awareness Day."

NY Assembly   Member Rosenthal NY State Senator Stavisky PA Representative Shapiro

In both states, legislators marked the day with proclamations explaining the severity of FD, the great advances that have been made in the treatment of FD, and the need for people at risk to get screened for the FD gene. The resolutions were sponsored by NY State Assembly Member Linda Rosenthal, NY State Senator Toby Stavisky and PA Representative Josh Shapiro. Their efforts not only raised awareness within the New York and Pennsylvania state governments (paving the way for future funding opportunities), they also helped spread the word to the general public.  In NY, FD families in attendance for the reading of the resolution were formally recognized on the Assembly Chamber floor. In Pennsylvania, the resolution was presented to organizers of the Path to the Cure FD Bike/Walk Tour in Abington, PA.   For more details, please see our news pages for the New York Resolutions and the Pennsylvania Resolution.

Visit our news page or follow us on Facebook for the latest updates on FD awareness.