August 2018                                                                                        Volume 29, Issue 6
2018 BDSRA Annual Conference 

"Walk the Line for a Cure" in Nashville was a great success.  From July 19 to 22nd, a record number of attendees came to their 'bonus family reunion' to renew friendships, meet new friends and welcome newcomers.  The conference is a profound way that we educate researchers, clinicians, industry partners and others about the needs of Batten families.  We hosted 8 different research projects from across the country, including one that will greatly speed the underpinnings of newborn screening testing in the future.  We are excited to show you photos from our time together with the hope you will join us next year in Denver.  The countdown has begun!

Check out our conference 
photo gallery!

The BDSRA Annual Family Conference would not be possible without our incredible team of volunteers. They helped with year round planning, registration prep, sessions, outings, and childcare.

Are you interested in helping BDSRA throughout the year? We are looking for volunteers to help tell the Batten story through blog posts, to connect with newly diagnosed families, and to share their expertise on many topics. Email Noreen Murphy at for more details. 
Resource Corner: NORD Educational Videos

Check out NORD's education videos on their YouTube page. They have videos covering common questions about Gene Therapy, a series answering member health insurance questions, and recent webinars on topics important to rare disease groups.

NORD has also issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking the organization's 35 years of voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.

For more information click here.
Fund the Need

During the conference we raised $12,000! The money will be split between the Batten Family Help Fund and the Emerging Research Conference Travel Award. Learn more about these programs below.

Batten Family Help Fund:  Families caring for loved ones with Batten disease sometimes face financial challenges that interfere with their well-being.  Thanks to donors, we have developed a small grant program of up to $750 to be used for emergencies. Families can apply for a Batten Family Help Fund grant here.

Emerging Research Conference Travel AwardEducate and motivate researchers new to the field to pursue projects in Batten disease by helping to defray the costs of attending the International Conference on Neuronal Ceroid Lipofuscinoses in London, UK (September 2018).

The following  four award winners were chosen for their dedication to the Batten community and BDSRA.
  • Shannon Dean, MD, PhD
  • Josh Dearborn, PhD
  • An Dang Do, PhD
  • Hemanth Nelvagal, PhD
SIB Highlight: Sophia Geer

Sophia Geer has sold crafts, organized denim days at her school, St. John Vianney, and this year, she held a very successful lemonade stand in her new neighborhood in Grand Rapids.  She's a superstar fundraiser for BDSRA and a member of the Batten Sibs program.  We send Sophia great thanks and a high five for a job well done!

Margie Frazier accepts Sophia G eer's donation to BDSRA raised at her Grand Rapids, Michigan neighborhood lemonade stand.  On the left is her brother, Jacob.
Recent Fundraising Events

Thank you to the following hosts (and those not listed below who requested to be anonymous). Your time and energy to organize fundraising events to donate to BDSRA is deeply appreciated by our entire community. 
  • Applebee's Flapjack Fundraiser in honor of Delaney Mickey 
  • Duck Races in memory of Kesley Shuros
  • Kevin Lumm Memorial Golf Outing in memory of Kevin Lumm
This month we have new Facebook fundraisers organized by:
Your support makes our mission possible! 
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. 

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