A STAR for Ben Foundation

For Salla Treatment And Research 

September 27-29, 2018

Tarrytown, NY 

In collaboration with

INFORMATIONAL VIDEOCONFERENCE

with Dr. Walkley & Dr. Wasserstein


 

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:

Think Tank

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. David Adams, M.D., Ph.D.

Dr. Kostantin Dobrenis, Ph.D.

Dr. William A. Gahl, M.D., Ph.D. 

Dr. Bruno Gasnier, Ph.D.    

Dr. Marjan Huizing, Ph.D.  

Dr. Marc C. Patterson, M.D. 

Dr. Richard J. Reimer, M.D.

Dr. Roberto Zoncu, Ph.D. *via video

Family Camp

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. 

Be a STAR

Support Think Tank & Family Camp

*Note: Contributions at this time are not tax-deductible. We hope to have approved tax-exempt non-profit status by October 2018.  However, non-exempt contributions can be made via YouCaring.com.

STAR THINK TANK & FAMILY CAMP

SEPTEMBER 27-29, 2018  TARRYTOWN, NY

Bringing together great minds and great families 

HOW TO REGISTER

1

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.

2

3

4

SUPPORT
& SHARE

COVER COSTS

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. 

DRAFT SCHEDULE

ThursdaySeptember 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) 

  • Private dinner

Saturday, September 29

  • Breakfast wrap-up and next steps

  • Afternoon STAR families social outing 

Be a STAR

Support Think Tank & Family Camp

*Note: Contributions at this time are not tax-deductible. We hope to have approved tax-exempt non-profit status by October 2018.  However, non-exempt contributions can be made via YouCaring.com.

ABOUT
Salla

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

ABOUT 
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.

With special thanks to 
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Salla Treatment And Research Foundation | PO Box 1051 | Riverdale Station | Bronx, NY 10471

©2018 by STAR for Ben