ABOUT STAR THINK TANK & FAMILY CAMP
The Salla Treatment and Research Foundation (A STAR for Ben, Inc., a new tax-exempt status pending organization) will convene an unprecedented think tank and family camp for researchers and families from Thursday, September 27, 2018 to Saturday, September 29, 2018.
The program will be designed on two tracks:
Nearly a dozen specialized researchers from around the world will be convened by Dr. Steven U. Walkley, DVM, Ph.D and Dr. Melissa P. Wasserstein, M.D. for an intensive dialogue on research strategies and potential collaborations. Other confirmed participants include:
Dr. Roberto Zoncu, Ph.D. *via video
STAR families will engage in workshops, participate in sessions with specialized therapists, and enjoy social outings. Confirmed therapists include:
Joy Bieder, M.Ed, Teacher of Visually Impaired (TVI), Certified Orientation and Mobility Specialist
Kouli E. Nalpantidis, Pediatric Occupational Therapist
Azriel Novogroder, PT, Pediatric Physical Therapist trained in CME (Cuevas-MEDEK Exercises)
Dorian Pascoe, MSPT, Pediatric Physical Therapist
Nutritionists and dietitians from Montefiore Hospital / Albert Einstein College of Medicine
Families and researchers will have the opportunity to meet one another as we launch efforts for the pursuit of innovative research and effective treatments for Salla disease.
STAR THINK TANK & FAMILY CAMP
SEPTEMBER 27-29, 2018 TARRYTOWN, NY
Bringing together great minds and great families
HOW TO REGISTER
Please tell us the names and ages of everyone in your family attending, as well as any dietary restrictions and special needs.
If possible, please register no later than July 1, 2018.
Book your travel to the New York area and a room at the Doubletree Hotel in Tarrytown, NY using our special group discount code, "SSB."
Help us to raise financial support to cover think tank expenses for up to 10 researchers (est. $1,750 each), for families in need of financial assistance to attend, and for the research ahead.
Share this website on your social media to raise awareness.
In addition to travel and accommodations, we ask families to cover their expenses for meals and the social outing - final costs and payment details will be determined and announced no later than July 1, 2018.
DOUBLETREE HILTON - TARRYTOWN, NY
Use the code "SSB" when booking to receive the special group rate: $159 per night + tax.
To receive the group rate, reservations must be made no later than August 28, 2018.
The hotel is situated in Tarrytown-Sleepy Hollow, home to Washington Irving's Legend of Sleepy Hollow and voted one of the Prettiest Town's in America. Charming shops and restaurants adorn quintessential main street making it a perfect walking town.
Thursday, September 27
Afternoon: Getting to know the STAR families
Evening: Social dinner for families and researchers
Friday, September 28
Workshops, therapies and think tank (more information to be announced)
Saturday, September 29
Breakfast wrap-up and next steps
Afternoon STAR families social outing
Salla is a genetic lysosomal storage disease that primarily affects the nervous system. It involves defects in a protein called sialin, which is needed to move a substance called free sialic acid within cells. Symptoms are due to the toxic build-up of sialic acid in the cells, particularly in the nervous system.
Salla disease is the mildest form in a group of diseases called sialic acid storage disorders. There is a moderate form called intermediate severe Salla disease and a severe form known as infantile free sialic acid-storage disease (ISSD).
Approximately 130 individuals are believed to currently be diagnosed with Salla disease, mostly in Finland and Sweden, with less than a dozen known cases, thus far, in the United States
A STAR for Ben
Treatments. Research. Education. Awareness. Family Networks.
A STAR for Ben was established in 2018 by Ben Foglio’s parents, Jessica and Michael Foglio, to generate scientific and medical research of this rare disease.
Pending 501 (c) 3 non-profit status approval, A STAR for Ben intends to support collaborative scientific research in order to accelerate the prospects for effective medical treatments for those affected with Salla.
A STAR for Ben is driven by an unwavering belief that no disease is too rare to fight, and that with sufficient support, hope, and faith, a small team of committed researchers, families, supporters, and advocates can create meaningful solutions for those impacted by this disease.