October 2017                                                                                            Volume 28, Issue 7
2016 BDSRA Annual Report


We are glad to share BDSRA's 2016 Annual Report.  Enjoy reading about our families, researchers and progress in key mission areas.


Resource Corner 

This month BDSRA conducted an Ask an Expert chat with Rosemarie Rossetti, Ph.D.
 
Rosemarie and her husband Mark have dedicated their time to increasing awareness of Universal Design principles and have built a national demonstration home called the Universal Design Living Laboratory.
 
As a person who uses a wheelchair, Rosemarie was able to use her first-hand experience to answer questions about how Batten families can use Universal Design to make their homes more accessible for their whole family. Topics discussed included bathroom remodeling, stair lifts and ceiling mounted lift systems, and accessible cars.
 
You can read the chat here.
 
Visit the Universal Design Living Laboratory website to learn more about Rosemarie and the fully accessible home she built.
 

Julie Smerdel, Tim Miller, Joshua Smerdel and Michelle Berg
Groundbreaking for Abeona Therapeutics Gene Therapy  Manufacturing Center


Julie and Jason Smerdel, parents to Mason, who has CLN3, were BDSRA's ambassadors for Abeona Therapeutics' groundbreaking of their new gene therapy manufacturing center, based in Cleveland, Ohio.  This is a great milestone for Abeona and for families from the Sanfilippo disease community who moved this project forward.  Their commitment to lysosomal disease helps Batten families and those with many more rare diseases.  Taylors' Tale, BDSRA and other rare disease foundations and patient groups cheered the news of the opening and future progress.

Selecting a Health Insurance Plan with a Rare Disease   

Open enrollment for healthcare is November 1- December 15, 2017.  Board member and insurance expert Donna Fogle will be participating in our Facebook "Ask-An-Expert" chat next Thursday, November 9th, at 8 pm EST.  The chat will be focused on answering questions about selecting health insurance coverage for 2018.

NORD created a series of videos to help rare disease patients and caregivers in the process of choosing a healthcare insurance plan.There are 4 videos covering  what questions one should 
ask  when  choosing their plan

Christina Clark, Bob Jensen, Hedda Rublin, Jennifer Dilley, Morgan
Tuff, Margie Frazier, Rob Geer
and Chris Lowden
BDSRA's Strategic Planning 
Process Underway   

"Efforts and courage are not enough without purpose and direction."  JFK
 
In January of this year a team of 6 purposeful and directed BDSRA members and staff joined together with highly skilled planning consultants Hedda Rublin and Morgan Tuff from TDC, Inc. to determine how best to use all of our resources to realize the greatest impact in research and support for Batten disease.  


BDSRA is on the Road

This Fall BDSRA has been traveling the nation advocating for families, spreading awareness, and learning about policy changes that affect the Batten community. Listed below are some of our recent and upcoming trips.
 
National Society of Genetic Counselors Conference - Columbus, OH

The National Institute of Neurological Disorders and Stroke (NINDS) - Washington, DC
Invited Panel Session: Drug Development Success Stories

Child Neurology Society Conference - Kansas City, MO

National Organization of Rare Diseases (NORD) Patient Advocacy Summit - Washington, DC

Strategic Planning Committee Meeting - Chicago, IL

NY/NJ Metro Chapter's 17 th Annual Bowl-a-Thon - Staten Island, NY

ALD Connect Family Meeting - Washington, DC
Invited Panel Session: Best Practices for Patient Engagement

2018 Family Conference Planning Meeting - Nashville, TN

Update of Translational Research for Management of INCL/LINCL - Bethesda, MD

American Epilepsy Society (AES) Conference - Washington, DC

Thank You BDSRA Community of Donors! 

Thank you to the donors last month who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions, they allow us to keep serving families and advancing the science of a meaningful treatment. This year we celebrate 30 years! Your dollars and support have helped create a leading organization in the Batten disease community and we are dedicated to continue the legacy of children and families. 

View recent donor gifts
2018 Family Conference

Mark your calendars for next year's family conference where we will Walk the Line to a Cure. It will be held from July 19-22 at the Nashville Airport Marriott. To stay in the loop about the latest updates for 2018, like the BDSRA Family Conference Facebook page and visit our website for photo memories from this year! 

In Loving Memory 


Remember with us those we have lost from Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

View names of those recently passed
 
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org
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