July 2025 Volume 36, Issue 7
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Another BDSRA Annual Family Conference is in the books! THANK YOU to everyone who traveled to Lincoln, Nebraska, and attended this year’s Conference—Batten families, SIBs, bereaved parents, researchers, clinicians, volunteers, sponsors, presenters/speakers, board members, Site Solutions Worldwide, Ira Graham III Photography & Films, and many others. We couldn’t have done this without you.
Information regarding presentation/session recordings as well as future programming will be available soon. View the full Conference photo gallery below and see more details regarding the upcoming Grief Chat in August.
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Thank You to Our Sponsors!
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At the latest BDSRA Board of Directors meeting in Lincoln, Nebraska, on July 10, the Board of Directors conducted leadership elections. The new board leadership, effective January 2026 (Treasurer role took effect immediately), is:
Board Chair – Barbara McDonough
Vice Chair – Suzette James
Secretary – Gretchen Fieschko
Treasurer – Wayne Kiefer
Congratulations to all!
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BOARD APPLICATIONS ARE OPEN!
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YOU could become a member of the BDSRA Board of Directors; applications are open and due by August 31.
Read the full description and qualifications on the application, and apply today by clicking the button below.
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Grief Chat for Bereaved Batten Parents
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Sunday, August 17, at 7 PM EDT
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Grief Chats return in August! The next Grief Chat for bereaved Batten parents is scheduled for Sunday, August 17, at 7 PM EDT. This is a time for bereaved parents to gather and support themselves and fellow bereaved parents, no matter where they are in their grief journey. First-time attendees MUST register.
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CURRENT EVENTS & ADVOCACY UPDATES
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Batten Disease Advocates Applaud B.C. Government’s Reversal on Brineura Funding
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| Batten Disease Support, Research, and Advocacy (BDSRA) Canada, the BDSRA Foundation, and its Batten Disease Clinical Centers of Excellence (CoEs) applaud the British Columbia Government’s decision to reinstate funding for Charleigh Pollock’s life-sustaining enzyme replacement therapy, Brineura, to treat CLN2 Batten disease.
Read the full press release from July 18, as well as the letter sent to B.C. Minister of Health Josie Osborne from the Batten Disease CoEs and Research Consortium on July 16, by clicking the button below.
Background
Ten-year-old Charleigh Pollock from Langford, B.C, Canada, has been fighting CLN2 Batten disease since her diagnosis at age three. For nearly seven years, she has received life-sustaining enzyme replacement therapy (ERT) cerliponase alfa (Brineura™), delivered every two weeks directly into her brain. This treatment costs approximately CAD $800,000 per year and has been publicly funded by provinces in Canada, including BC, since 2018.
In early 2025, Charleigh’s future was thrown into uncertainty when the B.C. Government announced its intention to cease coverage of Brineura. The decision was based on rigid clinical criteria indicating a decline in Charleigh’s motor and language scores, despite mounting evidence—shared by her clinicians, caregivers, and international experts—that she continued to benefit meaningfully in other ways: fewer seizures, improved comfort, and sustained quality of life.
Advocates from Canada, the U.S., and Australia rallied alongside Charleigh’s family to reverse the decision and reinstate coverage for Charleigh’s treatment, highlighting flaws in the current assessment tools and calling for shared decision-making between clinicians and families.
On July 17, B.C. Health Minister Josie Osborne announced that funding would be reinstated and continue “for as long as the treating physician and the family deem it appropriate”—a landmark moment for Charleigh and all families affected by CLN2 disease. |
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Contact your reps: Urge them to support Give Kids A Chance Act
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The Give Kids A Chance Act, introduced in the U.S. House of Representatives earlier this year, would incentivize pharmaceutical companies to develop treatments for rare pediatric diseases and give children with cancer access to combination therapy trials.
Learn more by clicking the buttons below!
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RESEARCH & CLINICAL UPDATES
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COMING SOON: Dr. Ineka Whiteman’s Latest Research Column
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BE ON THE LOOKOUT! BDSRA’s Head of Research & Medical Affairs, Dr. Ineka Whiteman, will be back with her monthly research column in the very near future.
Please keep an eye on your email and BDSRA’s social media channels!
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October 28-November 1, 2025
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On behalf of the NCL2025 Organizing Committee, BDSRA Australia is thrilled to be hosting the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) in the stunning surrounds of the Sunshine Coast, Queensland, Australia. As the premier conference on Batten disease, the bi-annual NCL Congress brings together world-leading researchers, healthcare providers, industry partners, innovators, and patient advocacy leaders from around the globe.
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Family Grants are Available!
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Whether it’s an urgent need, joy along your Batten disease journey, or sending equipment to another family in need, BDSRA is here to support you through our family grants.
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Complete The Family Register Form
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The BDSRA Foundation Family Register is a vital tool that enables us to keep you informed of ongoing Batten disease research, including future clinical research and natural history opportunities.
The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time. The form takes just a few minutes to complete and can be accessed by clicking the button below.
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Together, we remember those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.
To have your loved one’s name placed in The Illuminator and read at the Celebration of Life at the Annual Family Conference, please email patrick@bdsrafoundation.org.
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Are you planning a birthday fundraiser for BDSRA this year? Now is the time to start planning, and we are here to help!
Facebook is no longer paying the credit card fees for nonprofits and has turned over the program to another entity to manage. BDSRA is not currently eligible for their program, but we are working on it.
The good news is that BDSRA can make a custom link and QR code for you to create a birthday fundraiser that directly comes to us! Creating a Fam Fund is another great way to raise funds in celebration of your birthday, and we can do all the legwork for you.
If you are interested in setting up a Fam Fund for a birthday fundraiser or a stand-alone birthday fundraiser this year, please contact Beth Fries at Heather@BDSRAfoundation.org to get started.
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Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten disease. We want to acknowledge the donors who gave so generously last month to our work.
Together, we are Batten Advocates for a Cure.
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To view the list of recent donors, please click the button below!
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Give to the $5 Fridays Program!
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From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA Foundation receives for operations, the more money BDSRA can invest in programs, research, and advocacy.
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That’s the power of FIVE.
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We connect your donation to Support, Research, and Advocacy for families of all CLN types.
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