December 2021 Volume 32, Issue 12
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BDSRA Rings In the New Year and Hope for 2022
Dear Batten Community,
It’s hard to believe that just a year ago at this time I was interviewing with an organization I had never heard of before but desperate to learn more about—the disease called Batten. I am humbled by the warm embrace of the community which surrounded our team and me in 2021, and I am amazed by the output of our small but mighty team. Together, our community has passed legislation, participated in research conferences, offered monthly virtual programming, and granted many families the support they needed. Behind the scenes our board was working for us, and we were building the infrastructure to take us into the new year, our 35th year, and beyond. What I’ve discovered in the last year is that the love our Batten community gives fuels our work toward the cure, and that is what gives us all hope. May 2022 bring you love and the hope in a cure for Batten Disease.
With Hope,
Amy Fenton Parker
President & CEO
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BDSRA Team Attends #AES2021 in Chicago, Illinois
Annual Meeting of the American Epilepsy Society
The Annual Meeting of the American Epilepsy Society, organized by the American Epilepsy Society (AES) was held December 3rd-7th, 2021 at the McCormick Place in Chicago, Illinois USA. AES Annual Meeting brings together professionals from around the world who are involved in both research and clinical care for people with epilepsy including neurologists, epileptologists, neurophysiologists, neuroscientists, neurosurgeons, internists, pediatricians.
"The ability to attend these conferences in person and connect with our partners in Rare disease is invaluable. It’s an incredibly collaborative and supportive community, and I am grateful for BDSRA to have been so welcomed. I can’t wait for all the other parties needed to come along with us to expedite the cures we so desperately need." - Amy Fenton Parker
BDSRA President & CEO
"Attending American Epilepsy Society (AES) allowed BDSRA the opportunity to network with other rare disease patient advocacy groups, network, and share all innovation happening in the rare disease space. We were able to gather resources to help educate our community and bring those back for families. Epilepsy is an ever evolving field and we have great hope that better treatments to combat childhood seizures are coming down the pipeline."
-Morgan DeBoth
VP of Support & Advocacy
As the largest gathering on epilepsy in the world with 14,000 attendees, 1280 exhibitors, and 135 countries represented; the American Epilepsy Society's Annual Meeting is the event for epilepsy professionals in academia, clinical practice, industry, and advocacy.
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Annual Appeal: Thank You for Your Support!
BDSRA Concludes 2021 Annual Appeal
BDSRA would like to personally thank all of the generous community members who donated during our 2021 Annual Appeal. Each and every gift helps us continue our mission in support, research, and advocacy efforts. We greatly appreciate your constant support and commitment to our families!
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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:
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Upcoming Events for Batten Families
Asl-An-Expert: Clinical Edition | Jan 18th, 2022 | 6p EST | Virtual
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Learn about clinical updates and ask questions during this LIVE Q&A with Dr. Erika Augustine. Register or share this event with your community by clicking the link below:
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BDSRA Community - We Want Your Feedback!
2022 Conference Content Survey
We are so excited to see everyone for the 2022 BDSRA Family Conference in Cleveland, Ohio! We plan on having a limited hybrid option so people unable to attend in person can still be part of the conference. Please fill out the two-question form below to let BDSRA know how you are attending and what content you would like to see at the conference. Thank you!
This survey will close on January 5th, 2022.
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Community Needs Assessment
Our 2021 Community Needs Assessment is live. This assessment is used to inform BDSRA and guide us in all we do in our Batten community. This 20- minute survey gives us insight into our community so that we can better plan and be proactive around community needs. We thank you for your time and willingness to share. Click the button below to take our survey. Thank you!
This survey will close on January 5th, 2022.
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BDSRA Welcomes Linda Barkhurst to the Team
Welcome to the BDSRA Community, Linda!
BDSRA is proud to welcome the newest member of our team: Linda Barkhurst! Linda brings a wealth of knowledge with her years of work in the healthcare industry, and she is excited to get to know our Batten community within her new role. She loves taking on new projects and spending time with her seven grandchildren in her free time. We are looking forward to having her join the team as BDSRA Office Manager. Welcome Linda!
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Advocacy Updates
BDSRA End-Of-Year Advocacy Summary
Orphan Drug Tax Credit Update- Recently, the House passed the Build Back Better Act (HR 5376). Unfortunately, the final bill passed by the House contained the provision (Section 138141) that would limit the Orphan Drug Tax Credit (ODTC) to "the first use or indication with respect to which a drug for a rare disease or condition is designated under section 526 of the Federal Food, Drug, and Cosmetic Act." We continue to be concerned that limiting the credit – already reduced from 50 to 25 percent – for qualified clinical testing would diminish interest in evaluating a drug that has been approved for both rare and non-rare conditions for use to treat another disease or condition.
Cures 2.0, H.R 6000 - This bipartisan legislation was recently introduced in the House by Representative DeGette (D-CO) and Representative Upton (R-MI). This bill reflects the urgency and opportunity of the rare disease community to build on the momentum and successes of the 21st Century Cures Act (2016). The policies in Cures 2.0 will continue to improve lives and health outcomes by shortening the diagnostic odyssey, expanding scientific and data innovation, enhancing regulatory infrastructure, ensuring that patient experience informs decision making, and creating pathways to equitable access to novel treatments.
The Precision Medicine Answers for Kids Today Act (H.R. 5989)- included within the 21st Century Cures 2.0 Act and led by Reps. Eric Swalwell (D-CA), Scott Peters (D-CA), would advance patients’ access to lifesaving diagnoses, treatments, and cures; it would equip the globally connected community to eliminate certain challenges of rare diseases; and it would help ensure patients have access to all diagnostic testing, and—by extension—the clinical care, therapy, and treatment they require. ELF is proud to support this bill, which could improve health outcomes for tens of thousands of families living with a suspected rare disease.
RUSP Alignment 2022- RUSP legislation had a landmark 2021 in which the community achieved passage of four RUSP Alignment bills in Georgia, Ohio, Arizona and North Carolina. In 2022, efforts are being shifted to pass RUSP legislation in Iowa, Maryland, and Mississippi.
Learn more about these advocacy initiatives by going to
bdsra.org or everylifefoundation.org.
Take action on these initiatives by clicking the button.
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Research Updates from Industry Partners
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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Taysha Gene Therapies has announced an important milestone for the Queen’s University clinical trial for TSHA-118, a CLN1 disease clinical trial funded by Taysha Gene Therapies. Please read the community letter here.
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Beyond Batten Disease Foundation invites you to read their latest community update here.
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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.
Dicle Olgunsay- December 2021
To have your loved one's name placed in the Illuminator,
please reach out to Morgan at mdeboth@bdsra.org.
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BDSRA Community 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 button above. Thank you!
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Thank You BDSRA Community of Donors!
Thank you to the donors this past 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:
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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
Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
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