August 2022 Volume 33, Issue 8
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Rallying for Research | Donations Pave Way for BDSRA Research Position
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What started with a generous $5,000 donation soon grew into a live give-a-thon during the BDSRA Annual Family Conference’s banquet celebration in Cleveland with one goal in mind — securing funds for the hiring of the Vice President of Research position at the BDSRA Foundation.
Dr. David Pearce, President of Innovation Research & World Clinic at Sanford Health and a BDSRA Board Member, provided the lead gift of $5,000. Not long after, Wayne Kiefer and Larry Killen asked to lead the Text-to-Give campaign to help fund the VP of Research position.
What followed was a barrage of incoming donations and interruptions of the music blasting throughout the ballroom and dancing to update those in attendance of the amount of money being raised and what it was for.
“I was overwhelmed by the spontaneous support,” BDSRA Foundation President & CEO Amy Fenton Parker said. “To me, it was affirmation that our community has complete buy-in for the vision set forth by the strategic plan.”
Donations were given in cash, checks, credit cards through the website and text-to-give. Donors also secured company matches and funding for their volunteer hours, while Drew’s Hope, a non-profit foundation established in 2007 by Board Member Tony Ferrandino and his wife, Kate, in honor of their late son, Drew Ferrandino, committed to giving $10,000 per year for three years.
Overall, it is estimated that more than $42,000 was raised, including pledges.
“This funding will give us a great start to the reinvigoration of our Research program,” Parker added. “Now that COVID is winding down and labs are working again, we hope to see a VP of Research leading grantmaking. More funding is always appreciated for both, and I am so grateful to everyone at the conference who contributed and the initiative of Wayne and Larry to make it happen.”
The BDSRA Foundation would like to express its gratitude to everyone who donated to this cause. Without you, we couldn’t do our part to support, fund and facilitate research, and advocate for a cure for the Batten community.
Donations are still being accepted and plans for the research position will be announced later this fall.
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Bike for Batten Registration is Open!
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Registration for the 2nd Annual Bike for Batten fundraiser is now open!
This fundraiser, organized by Bekah Murphy, a CLN2 Batten aunt, features bike rides in Nampa, Idaho on Saturday, September 17th and Colville, Washington on Saturday, September 24th.
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“These rides are inspired by my two courageous and amazing nephews. They are Titus and Ely and they both have Batten disease. Titus ran into the arms of Jesus at the age of 6. His parents, Danny and Bekah and little brother, Ely, miss him tremendously. Just two weeks after Titus passed, Ely had the life-giving opportunity to begin an enzyme replacement treatment. This incredible treatment was created by a team of experts who desire to help Batten children have a prolonged and high quality of life. Ely is living proof that the research being done is indeed working! He is still able to walk, eat, and communicate. And this would not be possible without this enzyme replacement therapy. We are forever grateful for the work being done. The research teams and doctors are currently in the midst of finding a treatment to prevent blindness in children as well as gene therapy. There is a lot more work to be done and it is exciting! All funds raised during Bike for Batten will go directly to BDSRA Foundation (Batten Disease Support, Research, and Advocacy). You WILL make a difference in the lives of these amazing children.”
-Bekah Murphy
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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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BDSRA Foundation is Hiring!
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The BDSRA Foundation is hiring a Database Manager!
Joining the BDSRA Foundation as a valued team member is an opportunity to join the Rare Disease community by becoming a Batten Advocate for a Cure while serving families across the United States.
BDSRA has a tight-knit, collaborative work environment with a generous benefits package and seeks to continuously improve our work, and therefore, our impact on the Batten community.
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BDSRA Foundation participates in Rare Across America
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During the annual Rare Across America event, BDSRA Vice President of Support & Advocacy Morgan DeBoth participated in virtual meetings with representatives of Ohio Senators Sherrod Brown and Rob Portman alongside fellow rare disease organizations to advocate for legislation that would impact the rare disease community.
Click the button to learn more about these meetings and how you can advocate for the rare disease community!
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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 first meeting will be held on Sunday, September 18th!
Please email info@bdsrafoundation.org to get started!
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Last Call for 2022 Board Applications!
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Meet BDSRA Foundation Board Members
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BDSRA highlighted members of the Board of Directors across its social media channels this past month with video features that can now be watched on our YouTube channel!
Click on the names of the board members in the next column and get to know their board duties, hobbies, and Batten journeys!
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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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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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BDSRA Quarterly Grief Chat | Live Zoom Gathering | September 8th, 2022 | 7 p.m. EST
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The BDSRA Foundation will host its next Quarterly Grief Chat on Thursday, September 8th at 7:00 p.m. EST. This is an opportunity for loved ones to gather, share and support one another. BDSRA understands that each stage of this journey is different, and we are here for you.
Click the button below to register and join the event with the zoom link that will be sent via email following registration.
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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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Autumn leaves are falling which means Halloween is calling!
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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Watch the August Ask-An-Expert Webinar!
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Alongside BDSRA Foundation Vice President of Support & Advocacy and moderator Morgan DeBoth, Dr. Jonathan Cooper, Dr. Ineka Whiteman, Dr. Jonathan Mink, and Dr. David Pearce recap the research and clinical presentations from this year’s BDSRA Family Conference during this live Q&A.
Click the button below to watch the webinar and subscribe to our YouTube channel for more content and future webinars!
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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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August 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.
Devin Wayne Williams
October 19, 2004- August 12, 2022
Elvis Gutierrez-Cuevas
November 3, 2009-August 5, 2022
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 to the donors last 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.
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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 continuing that legacy of children and families.
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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
View Message Online Link
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