February 2023                                                                            Volume 34, Issue 2

Thank you to everyone who helped raise Batten awareness for Rare Disease Day.

BDSRA Foundation was represented in numerous locations with Board Secretary Donna Fogle meeting with Florida Congressman Aaron Bean in Washington D.C., Patrick Kotnik attending Rare Disease Day at NIH, Noah Siedman attending the FDA’s 2023 Rare Disease Day Virtual Public Meeting, and Amy Fenton Parker attending Rare Disease Day at Nationwide Children’s Hospital.

Click the button below to hear summaries from Fogle, Kotnik, and Siedman!

Stay tuned for the March edition of The Illuminator newsletter for summaries of Rare Disease Week on Capitol Hill.

It started with one mother of two CLN2 Batten disease-affected children seeing a social media post advertising the FDA CBER OTAT Patient-Focused Drug Development Listening Meeting — Patient Perspectives on Gene Therapy Products.

A collective effort ensued between four Batten mothers stretched across four states and three different time zones to create a presentation – with each Batten mother presenting in each of the four sessions on November 15, 2022.

Amanda Beedle (mother to CLN2-affected Annabelle and Abigail), Suzette James (mother of CLN2-affected Maya and Xavier), Claudia Fennell (mother of CLN2-affected Penelope), and Corrin Jackson (mother of CLN2-affected Evelyn) joined together to create a cohesive presentation.

Prior to John and Carol Patterson’s wedding this past November, the couple knew it didn’t make much sense to ask for wedding gifts.

After all, the couple already had full households and had enough problems combining their homes and possessions. Any gifts would’ve just added to the existing clutter. That’s when they decided to pursue the next best thing – giving back.

“We decided that we would do a charity,“ John said. “I pushed for BDSRA, and Carol came along fairly quickly because it is such an important organization with respect to the Batten families and the Batten research and all that.”

The 2023 BDSRA Annual Hybrid Family Conference will take place from July 14-16 at the Embassy Suites by Hilton Denton Convention Center in Denton, Texas! Book a room by clicking the button below!

Follow our website and social media channels for both in-person and remote registration information this spring.

Between completing the final stage of the moving process and hosting the Virtual Family Valentine’s Day Party, February 15th was a busy day for BDSRA.

Go behind the scenes of our office move and the Virtual Family Valentine’s Day Party by watching the video above!

Thank you to Two Men and a Truck for helping us move and to everyone who joined the party. Seeing those smiling faces was the perfect ending to a busy day!

BDSRA would like to extend its gratitude to Drew’s Hope for providing a grant for BDSRA staff to attend its Casino Night this past weekend. The event brought together family foundations, industry partners, and Batten families, locally and out of state, to fundraise and spread awareness. We are thankful for Drew’s Hope’s support and their continued service to the Batten community.

The BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give this community a platform to share their stories.

Sharing your story allows BDSRA to help raise awareness for Batten disease and advocate for improvements and developments for our three pillars — Support, Research, and Advocacy.

Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org if you’re interested in sharing your story with BDSRA.

Shared your story with local media? Let us know! Email Patrick and we will share!

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, Twitter, and YouTube to stay in the know on all things happening in our Batten Community!

Click below to follow all of our accounts: 

Courageous Parents Network,  a non-profit organization and educational platform that orients, empowers, and accompanies families and providers caring for children with serious illness, will be hosting two more virtual workshops over the next two months.

Each workshop is free to attend and will take place on Zoom.

The Batten Family Help Grant is exactly that – a grant to help Batten families in various ways.

Fore The Journey, a collaboration between BDSRA and ForeBatten Foundation, is a unique grant that offers families experiences, memberships, and gifts to provide happy moments along their uncharted journey with Batten disease.

Attention Medicaid and CHIP consumers, renewals are coming back! Many were paused due to COVID-19.

Be sure you get your renewal letter by making sure your state has your current mailing address NOW.

Research Updates from Industry Partners

BDSRA Foundation released a statement alongside its international partners last month regarding Neurogene Inc.’s difficult decision to discontinue its CLN7 Batten disease program

We believe it’s important to work together with our global patient advocacy partners to share important research updates in a unified, timely, and factual manner.

Visit the Research tab on our website to keep up with new and investigational studies! bdsrafoundation.org/research/clinical-studies/ 

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Theranexus, BBDF And Cardiff University Present Their Novel Research On Batten-1 And Batten Disease At WorldSymposium 2023

February 2023 Facebook Fundraiser Spotlight:

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 those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.

Josie Gail Bayer | October 18, 2011 – February 8, 2023

To have your loved one’s name placed in The Illuminator please email info@bdsrafoundation.org.

Thank You BDSRA Community of Donors!

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.

To view the list of recent donors, please click the button below!

Your gift makes all the difference in the lives of families. 

BDSRA Foundation

P.O. Box 30049
Columbus, OH 43230

(800) 448-4570 | info@bdsrafoundation.org | www.bdsrafoundation.org

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