April 2019                                                                                        Volume 30, Issue 4
Executive Director Announcement 

Dear BDSRA Community,

It is my pleasure to announce that Tauna Batiste will be joining our BDSRA team as Executive Director on May 20, 2019.

To read more about Tauna and her background click here

We are very excited to have Tauna join our team and looking forward to the future accomplishments she will bring.

Thank you,
Rob Geer and the BDSRA Board

Resource Corner: Advocacy Resources

Interested in helping to change policy on a federal, state, or local level? BDSRA is excited to share the following resources as we gear up our advocacy activities. 

Rare Across America: Coordinated by Rare Disease Legislative Advocates (RDLA), Rare Across America brings together  rare disease advocates a cross the country to meet in the district offices of their Members of Congress to advocate for legislation benefiting the rare disease community from July 29-September 8, 2019.

RDLA will schedule meetings for you and help you to prepare by providing key background materials and informational webinars.

Registration for Rare Across America 2019 will open on May 8th. Registration details will be posted here when registration opens.

Advocacy Tools: These advocacy tools are designed by RDLA to help rare disease patients, parents, caregivers and other affected parties learn the basics of legislative advocacy.  Below you will find resources that will help you understand the legislative process, how to get your organization's message out, and means for contacting your elected officials.

Legislation to reauthorize the Newborn Screening Saves Lives Act is expected to be introduced in both the House of Representatives and Senate soon. This legislation will continue critical federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, and ensure laboratory quality and surveillance for newborn screening. Without reauthorization, these programs will expire at the end of Fiscal Year 2019. 

We would love to hear from those in our community that have met with, sent letters to, called, or worked with their legislators at any level. Please reach out to Noreen at nmurphy@bdsra.org to share your experiences or post it online and tag BDSRA. We hope to share your stories with the community to encourage others to get involved.  

International Batten Awareness Day Virtual 5K 

We are excited to announce the return of the BDSRA Virtual 5K in celebration of International Batten Awareness Day! 

To participate in the Virtual 5K register yourself, your family, or your team online. You can choose to a registration with or without a T-shirt. On International Batten Awareness Day (or whenever you have time) run, walk, bike, swim, climb, or complete your 5K however you want. Make sure to take pictures and tag them #BattenDay2019!

More information and registration link coming in May! 
BDSRA Annual Conference Updates

Conference Stipends
Because of forward-thinking and generous donors who lost their children to Batten disease, each year, there is a limited amount of stipend funding available for families who need assistance to attend the annual BDSRA Conference.  Stipends include one room for up to three nights, lunch and dinner on Friday and Saturday and breakfast on Sunday of the conference. 

The BDSRA Canadian Chapter will be able to cover 3 nights of hotel (1 room per family) plus the conference meals for approved Canadian families. Limited funds are available for stipends so we are allocating on a first-come first-served basis. If a family chooses to stay at the hotel for additional nights or orders T-shirts; these costs will be at the families own expense. 

Canadian families that wish to apply for stipends should contact: Bev Maxim at canadabdsra@gmail.com.

You can learn more about stipends and download the application form here

Individuals and organizations of all sizes make it possible for our mission to create this one of a kind family-centered event. Whether it is a $500 donation or a $5,000 donation, it is extended family, friends and community members that make this the only event of its kind in North America. Sponsoring the 2019 Family Conference in Denver directly impacts our work, allowing us to continue our commitment to bridging the gaps in geography, knowledge and collaboration in service of important support and research efforts. For 30 years, the BDSRA Family Conference has been the cornerstone of our support programming and holds deep meaning to the community.

Learn more about sponsoring and download the sponsorship form here

Recent Fundraising Events

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
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org