December 2019                                                                                        Volume 30, Issue 12
2019 Year-End Campaign

Thanks to our Batten disease Community we had hundreds of touch points to Batten families providing support, education and most importantly hope this year. On behalf of them, thank you for proving they are not alone on this journey to a cure.

Our goal is to ensure we are always there when support is needed and to keep fighting for a cure. It's so important that Batten families have someone to lean on while navigating this journey and someone to connect them to the others walking the same road. We're committed to the following:
  1. Better access to care
  2. Advancing research and science translation
  3. Expanding engagement opportunities in the US and beyond

That's why our goal for this campaign is to raise $100,000 by December 31st. BDSRA is the only organization that supports all forms of Batten disease. When you support BDSRA, you are contributing to these crucial needs in the community. There is not one day that we aren't on a quest to find a cure and be there for families every step of the way as we get there. Will you donate $25, $50, $125, or $300 now to sustain our work to support and find a cure?

Resource Corner: IEP Resources from The Brain Recovery Project

The Brain Recovery Project was founded to fund research to help understand how to help children reach their full potential after hemispherectomy surgery. One way they support families is through IEP trainings. 

Their website includes an overview of the IEP process with videos, guides, and resources. Their goal is empower parents to advocate for the children and to fight for the services their child needs. 

Although the issues faced by Batten patients are unique and complicated many of these guides include general information that would be helpful for anyone going through the IEP process. 

You can access their IEP trainings and resources here

Meet the Team: Noreen Murphy

Noreen Murphy is the Director of Education and Advocacy at the Batten Disease Support and Research Association (BDSRA). She works closely with experts in a variety of fields to create educational resources for families on many topics. Current resources include regular Ask-An-Expert chats, monthly newsletters, the Annual BDSRA Family Conference, materials for teachers, and the New Family Packet. Noreen also administers BDSRA's annual research grant cycle. Prior to her 5 years with BDSRA Noreen obtained a master's degree in International Administration and Non Profit Management from the University of Denver. Noreen has worked for nonprofits her whole career and is passionate about using her skills to make a positive impact in the world. 

If you have resources you'd like to share with the community or questions about those that BDSRA provides you can reach Noreen at
National Society of Genetic Counselors (NSGC) Annual Meeting

In November Tracy attended the NSGC Annual Meeting in Salt Lake City, Utah. The NSGC Annual Conference showcases advancements across the breadth of the genetic counseling profession to provide education and build community. Attendees will gain knowledge of clinical and scientific best practices and insights into emerging research. It is so important to be able to meet and educate the counselors about Batten disease.
International Conference of Rare Diseases and Orphan Drugs (ICORD)

ICORD is an International  Society for all individuals actively involved in rare diseases and/or orphan drugs, including health care, research, academic, industry, patient organisations, regulatory authorities, health authorities, and public policy professionals.

The  mission of ICORD is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness.

One of the main activities of ICORD is the organisation of the ICORD  annual meetings, which have been successfully arranged ten times all over the world.

In November Tracy and Noreen attended the ICORD 2019 meeting in Tel Aviv, Israel in order to make connections with rare disease professionals worldwide.

BDSRA Board Member and IRDiRC Vice-Chair, Dr. David Pearce speaking at the 14th Meeting of the International Conference on Rare Diseases and Orphan Drugs (ICORD).

Another wonderful BDSRA Board member, Barb Wuebbels, speaking at the ICORD meeting. We are grateful that we have such expertise supporting the Batten community!

A Special Remembrance

During the holiday season, we have special remembrance all of our Batten stars. Available now in our store are memorial memento angels crafted from our former memorial panels. These angels are perfect to adorn you and your loved ones Christmas tree and homes this season.

You can purchase memorial mementos in the BDSRA Store
Fundraising Highlight: #GivingTuesday

Our sincerest thanks!

What an amazing response to our #GivingTuesday request. We were able to raise over $5,400 to assist families to attend Annual Family Conference 2020! Thank you!
We could not have done it without you.

This month we have new Facebook fundraisers organized by:
We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media!
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
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