May 2023                                                                            Volume 34, Issue 5

Join us as we celebrate families around the world and raise awareness and funds! BDSRA is hosting the 2023 International Batten Disease Awareness Day Virtual 5K on Friday, June 9th, 2023.

Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all CLN types.

Sign up, join a team, and raise funds today!

Thanks to our wonderful community, we’ve set and achieved fundraising goals of:

$10,000 ✅
$20,000 ✅
$30,000 ✅

Can we reach $40,000? We know we can do it! The finish line is near.

Encourage everyone you know to join and donate to your team and individual fundraising pages. Let’s go for the gold on our way to raising $40,000!

On Thursday, June 1st, we will begin the International Batten Disease Awareness Day countdown!

Prepare to share your Batten journey with this preview of our daily themes above. Use the hashtag #BattenDay2023 and tag BDSRA, and we will share your posts!

Advocating and raising awareness for all CLN types are purposeful to our mission and to fulfilling our long-term vision of a world without Batten.

The Batten community continues to inspire our staff each day when we come to work to serve families of all CLN types.

Watch below to see who we’re #RunningFor and #WalkingFor on International Batten Disease Awareness Day on June 9th.

Who are you #RunningFor or #WalkingFor during the Virtual 5K on June 9th? Let us know by clicking the button below, downloading your bib, posting to social media, using the hashtags above, and tagging BDSRA!

As we count the days until June 9th, BDSRA encourages the Batten community to seek proclamations in their local and state governments, officially recognizing International Batten Disease Awareness Day on June 9th.

This #ToolboxTuesday breaks down this critical piece of advocacy and awareness.

We congratulate this year’s International Batten Disease Awareness Day T-Shirt Design Contest winner, Kris Bonagofsky from Washington! Bonagofsky is a Batten grandmother to Amelia Palermo (CLN1).

“I like to draw. I paint rocks and hide them around in the parks and stuff and it’s for Amelia Palermo Rocks, it’s a group that Jennifer (Bonagofsky’s daughter and Amelia’s mother) started. So if people find the rocks, it’s to help spread awareness about Batten,” Bonagofsky said.

“I chose the butterfly as the image because butterflies are special to us as a family and to Amelia because each year, Jennifer and Phillip (Jennifer’s husband and Amelia’s father) usually get a couple sets of caterpillars, and they watch them grow and develop and then after the butterflies are ready to release, we usually do it as a family and go out in the backyard and release them. And lots of times, the little butterflies will come and land right on Amelia.”

Stay tuned for a full story on Bonagofsky’s T-shirt design and Batten journey leading up to International Batten Disease Awareness Day on June 9th!

Thank you to everyone who submitted a design and voted. We can’t wait to raise more awareness by sporting this T-shirt design with the rest of the Batten community!

Rare Sibling Stories, dedicated to highlighting the stories of rare siblings and their family members living with a rare disease, is looking to feature Batten siblings and their families on its social media channels for International Batten Disease Awareness Day on June 9th!

Anyone interested is asked to click the button below and complete a short survey.

In-person and virtual registration are open for this year’s BDSRA Annual Family Conference!

The conference will take place in Denton, Texas, from July 14-16.

Click the button below for information on registration, sponsorship information, FAQs, travel accommodations, and more.

Come “Give Batten the Boot” with us!

The Hubsch Family

Gina Hubsch attended her first conference last year in Cleveland, where she felt the community’s love from the moment she arrived with her daughter Scarlett (CLN2). Say hi to the Hubsch family this year in Denton, TX!

The Fries Family

For Beth Fries, a CLN3 Batten mother to Cecilia and Lilly, last year’s Annual Family Conference allowed sisters Nora and Ruthie to instantly meet new friends they could relate to through the SIBs Program.

BDSRA Foundation thanks Carley and Dylan Fogle for raising $425 for the organization through a lemonade stand.

Carley and Dylan held the lemonade stand during the Fort Lauderdale Air Show. The duo’s efforts were in honor of their cousin, Kourtney Harmon, who passed away from CLN1 Batten disease in 2010.

“She died before either of them were even born, but they have seen her photos and heard her story,” Donna Fogle said, BDSRA Board Secretary and Carley and Dylan’s aunt.

“My sister told them about the importance of doing things for charity and my brother suggested the lemonade stand and the collective effort (on-site and via Facebook virtual fundraising tool) raised $425! They were telling people as they walked by, ‘You look thirsty, come help us help charity,’ and letting neighbors know where to donate on the website too.”

We are grateful for Carley and Dylan’s advocacy efforts and thank them once again for raising funds for BDSRA and the Batten community.

Click below to read more about what BDSRA signed on to in May:

• Support for Medicaid VBPs for Patients (MVP) Act

Two Batten families in Ohio recently had their stories shared by local media.

Peter Heath wrote a book and recently had a signing, and Charlie Niciejewski received his own set of braille books thanks to a partnership.

Get to know the Murfield family, whose daughter Sloan was diagnosed with CLN1 in January, and the Beedle family, who’s hosting a fun run on June 10th to raise funds for BDSRA.

Local media featured both families.

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.

In case you haven’t heard, BDSRA Foundation has moved offices.

With that comes a new address to send mail to BDSRA. For any mail and shipments to BDSRA, please use the address below. 

P.O. Box 30049
Gahanna, OH 43230

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: 

Connecting Batten families of all CLN types to the support resources they need is critical to BDSRA’s mission and Support pillar.

During a #ToolboxTuesday in May, we featured the Resource Corner on our website!

Research Updates from Industry Partners

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 and BBDF win FDA approval on efficacy endpoints for the Phase III trial to evaluate Batten-1 in CLN3 Batten disease

To our CLN3 families across North America: to ensure you receive the latest updates on this clinical trial, and to express your interest in participating, please contact Beyond Batten Foundation at info@beyondbatten.org.

May 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.

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.

Lucia “Lulu”  J. Guerra | July 14, 2012 – May 6, 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!

We connect your donation to Support, Research, and Advocacy for families of all CLN types.

BDSRA Foundation

P.O. Box 30049
Gahanna, OH 43230

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

View The Illuminator online