October 2016                                                                                                                 Volume 27, Issue 8
In This Issue
BDSRA Family
Resource Corner
This website carries a variety of special needs toys and equipment which address a range of needs. Items are divided into categories which  include visual, auditory, tactile, proprioception, vestibular, motor, cognition, communication, socialization, and independence. Each category starts off with a description of the types of toys/equipment that are included and then lists the various items with pictures and descriptions. Buyers can leave reviews for others to read which can be helpful when determining if a toy will be the right size or function in the correct way. This website also has a small positioning page listed under "Independence" that includes a few types of chairs and cushions. 

Give Back with 
Amazon Smile
Follow these easy steps and donate to BDSRA each time you shop!
Through the Amazon Smile program 0.5% of your purchase will be donated to BDSRA. Sign up is simple:
  • Click here to go directly to the BDSRA page on Amazon Smile.
  • Shop for holiday decorations, gifts and every day purchases.
  • The process and products are exactly the same on Amazon Smile as they are on Amazon.
Donating has never been as quick and easy! Please share with your friends and family and help BDSRA continue to provide all of our much needed services.
Donor Gifts
The Batten Disease Support and Research Association has been remembered many times in the past month by families and friends affected by Batten disease.  
In Loving Memory
Global Genes Summit

This September the BDSRA staff attended the 2016 RARE Patient Advocacy Summit. Global Genes hosts the summit annually in Huntington Beach, California. The goal of the RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been recently diagnosed, are building a disease community, thinking about funding early research, actively engaged in developing a treatment, or have been advocating in rare disease for decades.  There were many incredible speakers throughout the event and we met with parents and advocates from multiple diseases to discuss the best ways to serve our communities.  BDSRA Executive Director Margie Frazier joined Gay Grossman, Parent Advocate for the ADCY5 Organization, to present a session on engaging researchers.  They discussed ideas on how to interact with researchers whether your rare disease has a large community or a very small group of researchers.  
Visit https://globalgenes.org/SUMMIT2016/ to see the agenda, pictures, and watch recordings of the sessions. 
Noreen Murphy, Carrie Ostrea (Global Genes) and Tracy Kirby

15th International NCL Conference

BDSRA was proud to co-sponsor the 15th International NCL Conference in Boston, October 5-9. Every two years, researchers from around the world come together to share findings and discover new opportunities for collaboration.  Over 200 researchers, industry representatives, patient advocacy group leaders and parents attended three full-day sessions, from basic research in cell biology to the latest clinical trial updates.  Six sessions were devoted to quality of life, burden of disease and educational needs.  BDSRA's family conference plenary session survey results were shared in a dialogue with families and researchers.  For more detailed information, see the NCL Web site here.  For interviews, updates and stories from the conference, see the Rare Disease Report updates here  http://bit.ly/2e8cIxw
The 2018 NCL Conference will be held in London, England, and organized by Dr. Sara Mole and the Batten Disease Family Association.

Quick Links

Crossfit 5 Flags in Pensacola, FL, hosted a Battle for Batten in August, and raised over $2,300 in honor of Jabyn Livingston.  Over 50 athletes participated in the WOD (workout of the day).  They also had a bounce house, food trucks and face painting for the kids.  Thank you to Jenna Wright for organizing the event!

Donate to BDSRA Through the CFC Campaign

     The fall months bring the official kick-off for the national Combined Federal Campaign (CFC) and many United Way Agency workplace campaigns.   Donors to either CFC or United Way can designate their gift or pledge to Batten Disease Support and Research Association to benefit the research and service efforts underway for families with Batten disease.
     For federal government employees, postal employees, military families, and state government employees linked to the CFC, making a charitable gift to BDSRA through the CFC is a simple process.  In the 2016 Catalog of Caring, the BDSRA charity CFC registration number is 11781.  Donors can contribute online or through a paper pledge form and designate their contribution by filling in the 5-digit BDSRA code. Gifts can be made through credit/debit cards, eCheck, cash, check, or payroll deduction. 
   To determine the CFC regional campaign locations in each state, or to request a pledge card, visit   www.opm.gov/cfc/ and click on the link "Donating through CFC." 
     Those individuals wishing to direct their workplace giving through the United Way campaign to BDSRA can reach their local United Way agency by the national website www.liveunited.org.   
     Gifts through affiliated campaigns are a great opportunity to support the mission of research and service and touch the lives of many children and families facing Batten disease. 
Batten Disease Support and Research Association | (614) 973-6013 | tkirby@bdsra.org | http://www.bdsra.org
1175 Dublin Road
Columbus, OH 43215