July 2022 Volume 33, Issue 7
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Recapping the 2022 BDSRA Foundation Hybrid Family Conference
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The BDSRA Foundation staff and board would like to thank everyone who attended this year’s Hybrid Family Conference. Whether you attended in-person or remotely, we hope you enjoyed a weekend full of resources, support and togetherness. Thank you to all our panelists for sharing valuable research and insight for the Batten community. A final thank you goes to our sponsors and donors. We are grateful for your never-ending support that helps bring the Batten community together from all over the world. See you next year in Denton, Texas from July 14-16!
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Behind the Scenes of the 2022 BDSRA Family Conference | A World Without Batten
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Meet Batten Parents and Grandparents
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Complete the Post-Conference Survey!
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If you attended this year’s BDSRA Hybrid Family Conference, please take the time to complete our post-conference survey! Your feedback is important to us as we strive to improve your experience at future family conferences!
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The Batten Disease Clinic at the Kennedy Krieger Institute in Baltimore, MD is now open
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The BDSRA Foundation and Kennedy Krieger Institute are excited to present a new resource for the Batten community!
The Batten Disease Clinic at the Kennedy Krieger Institute in Baltimore, MD is now open as a resource for consultation and ongoing care for families!
Watch this video for details!
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BDSRA Foundation Staff Attends World Orphan Drug Congress in Boston
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BDSRA Vice President of Support & Advocacy Morgan DeBoth provides her takeaways from the 2022 World Orphan Drug Congress in Boston below.
“There are trends emerging in collaboration between industry and patient advocacy. Many sessions stress that industry needs to be mindful of the burden placed on patient populations. Conferences like this allow for open connection and collaboration between patient advocacy groups and those at the nexus of clinical trial design and regulation. BDSRA Foundation is able to identify emerging trends and foster firm relationships with others in the rare disease space. We can better leverage the patient’s voice when conducting patient advisory boards and use this new information to effectively share our community’s stories.”
-Morgan DeBoth, Vice President of Support & Advocacy
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Meet with our Advocacy Committee!
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Our Advocacy Committee invites you to discuss local and federal advocacy efforts, Newborn Screening, Rare Disease Week, how to share your story, and more!
Virtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET.
Please email info@bdsrafoundation.org to get started!
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Young Adult Representatives of RDLA (YARR) Leadership Academy
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Are you a young adult committed to the rare disease community and ready for a leadership role?
The EveryLife Foundation for Rare Diseases is excited to offer the Young Adult Representatives of RDLA (YARR) Leadership Academy, a series of free on-line courses offered to a select group of young adults in the rare disease community (ages 18-30). Academy students will learn about the roles and opportunities for patient representation in policy-making, drug development, and the regulatory process.
To learn more and apply visit: https://bit.ly/3rhyFM3 (Space is limited so hurry up and get your application started).
Deadline to apply is August 5th, 2022.
Watch this video to learn more!
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2022 Board Applications Are Open
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BDSRA Board Member Spotlight | Q&A with Tony Ferrandino
Get to know BDSRA Foundation Board Member Tony Ferrandino in this Q&A. Tony lives in Newtown, PA with his wife Katie and son Gavin. His son Drew passed away in 2014 from CLN2.
Click here to read the Q&A!
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The BDSRA Foundation has multiple grants and services available to assist Batten Families, including the Batten Family Help Grant, Fore the Journey Fund, and Equipment Exchange.
For any questions on grants and resources please email BDSRA Vice President of Support & Advocacy, Morgan DeBoth, at patrick@bdsrafoundation.org.
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Do You Follow BDSRA on Social Media?
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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:
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Upcoming Events for Batten Families
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Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief | Q&A | 17 August 2022 | 6 p ET | Virtual
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Join us for Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief on Wednesday, August 17th at 6 p.m. EST with Batten experts. This session will recap the research presentations at this year’s Family Conference and have a live Q&A.
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!
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Research Updates from Industry Partners
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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July 2022 Facebook Fundraiser Spotlight:
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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!
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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.
Michael Metcalf | July 3, 2022
To have your loved one’s name placed in the Illuminator please reach out to Morgan at patrick@bdsrafoundation.org.
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Thank You BDSRA Community of Donors!
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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.
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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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To view the list of recent donations, please click the button:
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Your gift makes all the difference in the lives of families.
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Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
View Message Online Link
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