September 2022 Volume 33, Issue 9
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I’ve been working since I was 16. Receiving a regular paycheck every couple of weeks helped me budget for gas, clothes, and eventually rent and a car payment monthly. Most of us use our heads to create a monthly budget based on what we earn on a regular basis. Where we choose to give our charitable donations is often decided from the heart. And yet, we can use both when we decide to make an investment in the mission of the organization we love.
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Investing in this mission allows us to Support families through grants from the Batten Family Help Fund and the Equipment Exchange Fund in which we provide shipping for equipment that families want to gift to other Batten families across the U.S. The good news is that we’re currently three times over the budget on those shipping costs because of the generosity of our families.
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Above: Jacob Ax, who has Late Onset CLN2, received an adaptive bike through the Fore the Journey Fund, a collaboration with BDSRA and the ForeBatten Foundation to make grants that bring happy moments through individualized experiences.
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Investing in the BDSRA mission has allowed us to attend conferences, bring together researchers and share new information learned with our community through our monthly newsletter, The Illuminator, on our website, and the Ask-An-Expert webinars held through virtual quarterly meetings. It has helped us to build up savings for research grants we hope to award soon and pay for those grants previously awarded since the labs have re-opened.
Investment in Advocacy has helped to pass multiple bills across the country to adopt Recommended Uniform Screening Panel (RUSP) alignment for newborns. It has allowed us to coach others in the Batten community to join us in meeting with local, state, and federal government representatives. It has afforded the opportunity to learn and join forces with others in the rare disease community to educate professionals in the field about Batten disease. We plan to budget a trip to D.C. for Rare Disease Week and support up to five families who want to join us.
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Above: The SIBs program enjoys a trip to the Cleveland Zoo during the BDSRA Family Conference in Cleveland, OH last July.
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BDSRA has a monthly budget, yet our income fluctuates tremendously throughout the year. Imagine how much more effective we could be if we too had a regular paycheck. Making an investment in the mission through your budget on a regular basis helps us better plan for what comes next — growing the Support programming for SIBs and Life Goes On; bringing on a Science Officer for Research; Advocating for our families’ needs in education, in government, in healthcare.
My heart broke when I learned about Batten disease, and I made the decision to invest monthly in the BDSRA mission when I joined this wonderful organization. I invite you to consider what you can afford to invest from your monthly budget in the mission of BDSRA. The impact of the returns you will receive will be far greater for the heart than your head could ever imagine.
-Amy Fenton Parker, BDSRA Foundation President & CEO
To give monthly, you can click the button below to sign up on the BDSRA website.
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Bike for Batten Raises $3,275 for Research
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The Bike for Batten fundraiser, organized by Bekah Murphy, a CLN2 Batten aunt, featured bike rides in Nampa, Idaho on Saturday, September 17th and Colville, Washington on Saturday, September 24th. Others participated in bike rides in their respective hometowns. The $3,275 raised will go to the BDSRA Foundation for research. Read Bekah’s experience at this year’s event below!
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“Overcoming together.” These two words sum up my experience with this year’s Bike for Batten fundraiser. Together, as a family, as friends, and as a community, we overcame. We overcame flat bike tires. We overcame exhaustion. We overcame loneliness. And working through these obstacles, we experienced the most beautiful fall days to ride the countryside. We experienced hope and joy in the very presence of grief and heartache. And we experienced community coming together to raise $3,275 that will go straight to Batten Research! Great things happen when we overcome together. Strength and hope will emerge.
I’m so thankful for the ability to work with the BDSRA Foundation and for their work to make Bike for Batten happen! And a huge thank you to all the donors and supporters. See you next year!
-Bekah Murphy, CLN2 Aunt
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Interested in hosting a family fundraiser? Please contact BDSRA Foundation Vice President of Support & Advocacy Morgan DeBoth at patrick@bdsrafoundation.org for more information.
Click the button below to learn more about community fundraising!
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BDFA Hosts BDSRA at Family Conference in the U.K.
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Above: BDSRA’s Morgan DeBoth (left) with Amelia Carroll (middle), who’s affected by CLN2, and her mother, Lucy Carroll (right).
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BDSRA Foundation Vice President of Support & Advocacy Morgan DeBoth traveled to the United Kingdom to attend the Batten Disease Family Association’s (BDFA) conference. Read about her time at the conference below!
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BDFA invited the BDSRA Foundation to attend their family conference to show international solidarity and support to the greater Batten community. This was the first in-person Batten in the U.K. in five years. This conference hosted 30 Batten families, researchers, and clinical participants. Attending this conference provided a glimpse into how another community of Batten patients and parents is being served. While BDSRA and BDFA work closely with one another, it was inspiring to see the fellowship between the two organizations and how we are both striving to provide the best education and support.
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Above: BDSRA’s Morgan DeBoth spent time with Renesmee Carroll, a Batten sibling.
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Having a strong international network allows us to collaborate and lean on each other throughout clinical trial design, educational pieces for families, support, research, and stewardship. I think attending a conference like this allowed me to see how another organization experiences the Batten community. Seeing how they approached families, approach industry, and how they go about supporting and educating will give me the inspiration to pull from when serving U.S. families.
-Morgan DeBoth, BDSRA Foundation Vice President of Support & Advocacy
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Right: The University of Cardiff’s Dr. Emyr Lloyd-Evans presented on Miglustat, CLN3 and CLN5.
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BDSRA Attends Global Genes RARE Patient Advocacy Summit
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Above: Sebastian (CLN8) and father, Chris Velona, were able to travel a few hours from home to attend the conference.
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BDSRA Foundation President & CEO Amy Fenton Parker attended this year’s Global Genes RARE Patient Advocacy Summit in San Diego, while Vice President of Support & Advocacy Morgan DeBoth and Marketing & PR Coordinator Patrick Kotnik attended remotely.
Read below about Amy’s experiences and takeaways while attending the event!
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Left: Ben Forred from Sanford Research and the CoRDS Registry was Amy’s mentor at the conference, which were provided to all first-year attendees. Right: Suzette James, mom to Maya, joined Amy and Chris at the Awards dinner on Tuesday evening.
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There are many exciting opportunities in research, and there are many people interested in discovering new ways to collaborate on science and research for the greater good. It was especially good to meet families and industry partners for the first time in person. The connections I made at this conference have inspired shared ideas in the rare disease space. Listening to topics and opportunities for future conferences and virtual programs we want to offer to our Batten community was inspirational. Not only did we have Batten families in attendance, but some were also speakers, and I was able to meet with them.
I learned about some exciting new offerings that are in development for our Batten caregivers and was able to share insight as a family advocate. I look forward to sharing more when these are available to the community at large. I was able to meet with Ben Forred from the Coordination of Rare Diseases at Sanford (CoRDS) registry and discuss how we can work better together to serve our community and the researchers who want access to the shared information. I learned more about what Global Genes has to offer the BDSRA Foundation and our families. I spent time with some established podcasters to discuss Batten disease and hope to share our story in future episodes. I also met with some rare parents who are developing apps to simplify record and information storage and sharing, and I’m excited to share those out as well when complete. I was inspired by so many parents whose stories are so similar to those told to me by our Batten community and reminded me that as a community of Rare diseases, we are not alone.
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I spoke with many about the role science plays within their organizations, and it affirmed that we are headed in the right direction. I understood on a deeper level the impact support for grief at every stage in the journey makes for caregivers and that we need to develop our Life Goes On programming more fully. There was also a lot of time spent on sibling needs, and it was affirming that we have a SIBs program and so much opportunity for growth for them.
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Above: Julia Vitarello was one of a few Batten moms to serve on panel discussions throughout the conference.
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There were also many sessions offered on fundraising and supporting our families who are raising funds for BDSRA Foundation. To accomplish our goals in the strategic plan and create a world without Batten, we need to raise awareness and garner more financial investment in our work.
-Amy Fenton Parker, BDSRA Foundation President & CEO
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BDSRA Shows Support for Newborn Screening During Newborn Screening Awareness Month
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September is Newborn Screening Awareness month and BDSRA Foundation continues to advocate for Newborn Screening so that debilitating and life-threatening diseases are diagnosed and treated at the earliest age possible to avoid devastating delays.
Visit and subscribe to our YouTube channel to watch our #ToolboxTuesday videos dedicated to Newborn Screening awareness and education.
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BDSRA Foundation Joins Organizations in Urging Congress to Take Action on NBS Bill
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During Newborn Screening Awareness month in September, the BDSRA Foundation joined fellow non-profit advocacy and association partners in urging the Senate HELP Committee to take action on S. 350, the “Newborn Screening Saves Lives Reauthorization Act of 2021”.
Advancing this legislation to the senate floor would bring this bill one step closer to innovating newborn screening programs and an end to the senate’s delay, jeopardizing the health and well-being of thousands of newborns across the country born with serious and life-threatening conditions.
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BDSRA Foundation Supports the Reauthorization of SBIR and STTR
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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. The next meeting will be held on Sunday, November 20th!
Please email info@bdsrafoundation.org to get started!
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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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Interested in Sharing Your Story?
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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.
Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org if you’re interested in sharing your story with BDSRA.
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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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Peer Support Group Leader Training | Live Zoom Event | October 4th, 2022 | 7 p.m. EST
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Join us for BDSRA Peer Support Group Leader Training on Tuesday, October 4th at 7 p.m. EST. This session is open to anyone interested in helping others share their stories, supporting them during their Batten journeys, and leading support groups for the Batten community.
Register by clicking the button below and join the session on October 4th with the zoom link sent after registration.
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3rd Annual BDSRA Boo Bash | Live Zoom Event | October 25th, 2022 | 6 p.m. EST
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It’s officially fall, which means Halloween is just around the corner!
Join us for the 3rd Annual BDSRA Boo Bash taking place on October 25th at 6 p.m. EST! Prepare for a night filled with tricks, treats, activities, and a story!
Click the button below to register and join the event with the zoom link that will be sent via email following registration. Follow BDSRA’s social media channels for updates on activity boxes!
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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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No update available at this time.
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September 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.
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 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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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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