November 2018                                                                                        Volume 29, Issue 9
Global Genes Rare Patient Advocacy Summit

October 3-5 BDSRA attended t he 2018 RARE Patient Advocacy Summit. The summit, hosted in Irvine, CA, is largest education event for rare disease advocate in the country. Click these links to see the summit  agenda and  watch session recordings. 

This year's summit included a pre-conference meeting,  Peer Support Bootcamphosted by  Child Neurology Foundation and Global Genes. During this session Child Neurology Foundation's Family Support and Empowerment Program Peer Support Specialists facilitated a discussion and shared their real-life experiences in peer support.

After the Summit BDSRA participated in Rare Access to Critical Therapies (ACT) Stakeholder Summit. This event brought together advocate, patients, clinicians, members of industry, and government officials to discuss access to therapies and how as a community we can remove barriers to access.   

Save the Date for Giving Tuesday!

Giving Tuesday provides a national opportunity to raise awareness and funds for the
Batten disease community. Join us in sharing our social media posts, spreading the word to friends and co-workers about the work we do and starting a Facebook fundraiser for "BDSRA." Facebook is matching #givingtuesday donations!

Together, we have supported and advocated for all families impacted by all forms Batten disease and built a strong foundation for research and scientific advancements. Our vision is a world without Batten disease.  Help us get there by donating on Tuesday, November 27th! 

Donate directly:

Start a Facebook fundraiser:  or search for "BDSRA" in the list of Facebook's verified Nonprofits. You will see our logo next to our name. 

Share our content to encourage others to make an impact in this incredibly deserving community.  Thank you for supporting #givingtuesday !!

NORD 2018 Summit

Last month, BDSRA, represented by staff member Christina Clark, was invited to speak on a
panel at the National Organization of Rare Diseases (NORD) Rare Diseases & Orphan Products Breakthrough Summit. The session was to all Summit attendees (approximately 800) on the topic: How Patients Are Helping Drive Research and Drug Development.

The panel was moderated by Christopher Austin, M.D. Director at National Center for Advancing Translational Sciences (NCATS) at the National Institute of Health (NIH) and included several other industry and patient representatives. The discussion set the tone for the rest of the  conference focused on "a new era of patient-focused innovation."

Christina was later interviewed for an article with Rare Disease Report covering the panel:

Speaking on behalf of the Batten disease community is one of the ways the BDSRA advocates for patients and families at different steps along the journey to treatments and cures. It was inspiring to hear the commitment of so many, and the progress being made on behalf of the entire rare disease community. We look forward to future opportunities to collaborate, share and create meaningful change. 

BDSRA Board of Directors: New Members       

Board elections for BDSRA were held in October  and the board has elec ted  two new members and approved the re-election of three current members. Elected to a three year term are new members Brock Benroth and Trent Lewis, they join returning board members Tony Ferrandino, Bob Jensen and Chad Killen.
To read more about your BDSRA board members please click here.  

The Launch of BDSRA's Annual Giving Circle!

We value the commitment you've made to BDSRA so deeply. Because of this we have  created an Annual Giving Circle to recognize yearly donor contributions at three different levels: 
  • Friend Circle ($1,000+) 
  • Leadership Circle ($5,000+) 
  • Sustaining Circle ($20,000+)

The Annual Giving Circle is our  way of thanking you for the financial gifts you make each year that fuel the progress of our mission. During the last 30 years, the BDSRA has significantly changed the Batten disease landscape. You keep us moving forward. 

We continue to fight for all families and all forms. Thank you for everything you do to collaborate with us and make bigger waves of change possible. 

If you would like to become a member of BDSRA's Annual Giving Circle, please make an annual contribution of $1,000 or more. You do not have to make a single donation of $1,000, the Giving Circle counts your total annual contribution (i.e. two donations of $500).

The Giving Circle Newsletter will launch in 2019. What would you like to hear from us? Please share your feedback with BDSRA by emailing us at

Child Neurology Society Conference

BDSRA exhibited at the 2018 Child Neurology Society (CNS) Conference in Chicago, IL. While exhibiting we are able to talk with many clinicians who see Batten patients, educate others on what Batten disease is, and share family stories with industry and other organizations. 

Going to this type of conference is an important way for BDSRA to meet clinicians for all over the world and provide the patient voice!

BDSRA Annual Family Conference: Planning for Denver!

In October the first family planning meeting was held for the 2019 BDSRA Annual Family Conference in Denver, CO! We were able to meet with Colorado families to talk about sessions, outings, fundraising and all other things conference. 

The conference will be held at the  Renaissance Denver Stapleton Hotel July 18-21, 2019. 

If you or your company are interested in helping to fund this important event take a look at our sponsorship form here or contact Christina Clark at or 614-973-6012. 
Workplace Giving & Matching Gifts

If you are planning to make a contribution to BDSRA this giving season, check with you workplace first to see if they offer a workplace giving or matching gift program. Many employers will help you double your gift and impact!  Every workplace is a little bit different, some will allow you to make your contribution through the organization out of your paycheck pre-tax and others will match the amount you contribute, often up to a certain amount. Most employers will need a few pieces of information about the organization you are contributing to. No matter how you choose to give back, we are incredibly grateful for your consideration this time of year. It is such an important season to help us serve the community all year long! 
  • Tax ID number (EIN), BDSRA's is: 91-1397792
  • Nonprofit status, BDSRA is a 501(c)(3) 
  • Organization name and address: 
    • Batten Disease Support and Research Association (BDSRA)
    • 2780 Airport Drive, Suite 342, Columbus, Ohio 43219
Combined Federal Campaign (CFC)

The fall months bring the official kick-off for the national Combined Federal Campaign (CFC) workplace campaigns. 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.

Donors to CFC can designate their gift 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 2019 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 learn more and to join the 2018 Giving Campaign please click here
Recent Fundraising Events

This month we have new Facebook fundraisers organized by:
In Loving Memory 

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

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. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families. 
View recent donor gifts 
Batten Disease Support and Research Association | (614) 973-6013 | i | w