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March 2022 Volume 33, Issue 3
International Batten Awareness Day 5k Run/Walk Registration Now Open!
Join us for International Batten Awareness Day June 9, 2022. Each year on June 9th we rally the community to raise awareness for those battling Batten Disease. To commemorate International Batten Awareness Day, BDSRA hosts a virtual 5k run/walk event. We encourage our community to participate by registering as a participant or a cheerleader. All funds raised during the registration go towards our mission: A world without Batten. Sign-up your team and rally your community! BDSRA will have an activity coursemap that includes 9 days of activities kicking off June 1st, ending with the Virtual 5k Run/Walk on June 9th!
BDSRA Annual Family Conference 2022: A World Without Batten
Conference Registration opens April 11th! Please visit bdsra.org to for more information on that date! Room blocks are the Hilton Cleveland Downtown are now open. Hilton Cleveland Downtown 100 Lakeside Ave East Cleveland, OH 44114 T: 216-413-5000 To book your room visit: https://book.passkey.com/go/BDSRA22 Group Code: BDSRA
Do You Follow BDSRA on Social Media?
Want to see more BDSRA content? Don’t miss out on upcoming events, information, campaigns and community posts! Follow @BDSRA on Facebook, Instagram, LinkedIn and Twitter to stay in-the-know on all things happening in our Batten Community! Click below to follow all of our accounts:
Upcoming Events for Batten Families
Peer Support Group Leader Training | 5 April 2022 | 7p ET |Virtual
BDSRA wants to take a moment to thank you for your vulnerability and willingness to step into a leadership role. Volunteering to share your heart, skills, and experience will undoubtedly have a huge impact on those who walk through this journey with you. We hope this training gives you some extra tools to be the best leader, friend and support to those in your group. We also would like to acknowledge the hard work and dedication it takes to facilitate a peer support group, and we want you to know we are here to support each of you.
Equipment Exchange| 22 April 2022 | All Day | Virtual Facebook
This is an opportunity for individuals and families to declutter unused equipment and assist other families in the process. All items posted in the group on the 22 will be viewable to the community. We encourage you to search for items you need and post items you would like to see go to a new home. To learn more about our year-round equipment exchange efforts visit: https://bdsrafoundation.org/family-grants/ https://bdsrafoundation.org/event/facebook-equipment-exchange-swap-day/
AAE: Courageous Parents Network | Q&A | 20 April 2022 | 6 p ET | Virtual
Join us for Ask-An-Expert: Courageous Parents Network Edition on Wednesday, April 20th at 6pm EDT with Blyth Taylor Lord. Register with the link and join from Facebook Live or the webinar link that will be sent via email upon registration. Register with the button below.
March Ask-An-Expert Recording!
Check out last month’s live recording of our Ask-An-Expert series presented in partnership with Rare & Ready Coalition.
BDSRA Virtual Focus Groups
Advocacy Updates
RUSP Advocacy Wins- Great news from Mississippi and Iowa! Earlier this month, HB 927 passed out of the Mississippi legislature, unanimously in both houses. This legislation implements a three-year timeline in which screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP). Two weeks ago, SF 2345 passed out of the Iowa legislature, unanimously in both houses as well. This legislation implements a two-and-a-half-year timeline in which screening must begin for new conditions added to the federal RUSP. Both bills now go to the Governor’s desk for their signature.
BDSRA’s Call to Action: CLN2 Community Speaks with FDA
BDSRA would like to announce that the CLN2 community has had phenomenal luck with engaging with FDA. We continue to support their efforts as we look toward re-submitting a PFDD for all CLN types (Patient-Focused Drug Development) ask to FDA in the upcoming months. We appreciate all our dedicated advocates who organized and orchestrated their efforts. If you are a CLN2 family member and would like to connect to other advocates, please email Morgan DeBoth at mdeboth@bdsra.org.
Click the button to learn more about Patient-Focused Drug Development.
Research Updates from Industry Partners
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March 2022 Facebook Fundraiser Spotlight:
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! You can visit each fundraiser by clicking on the names above. Thank you!
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. Harper Murnane May 06, 2016 – March 26, 2022 To have your loved one’s name placed in the Illuminator please reach out to Morgan at mdeboth@bdsra.org.
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.
To view the list of recent donations, please click the button:
Your gift makes all the difference in the lives of families.
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