April 2022 Volume 33, Issue 4
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BDSRA Annual Family Conference 2022:
A World Without Batten
Registration is open and we look forward to gathering, learning, and connecting with each of you.
BDSRA is excited not only to gather in person in July, but to be able to provide a hybrid conference for those who cannot join us in person this year in Cleveland, OH.
Our theme this year, A World Without Batten, is inspired by BDSRA's mission and the NASA Glenn Research Center in Cleveland.
As we envision the future, we hope and strive toward a world without Batten disease and invite you all to journey alongside us.
We look forward to seeing you this July.
BDSRA will be accepting poster submissions for our annual conference. Please plan to submit your poster for consideration by June 22nd. We will have posters available for viewing to both our virtual and in-person audiences.
Please use the template found here to create your poster.
Please submit all posters to Morgan DeBoth at mdeboth@bdsra.org. For more information visit the link below.
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International Batten Awareness Day 5k Run/Walk Registration!
Join us for International Batten Awareness Day June 9, 2022. Each year on June 9th we rally the community to raise awareness for those battling Batten Disease.
To commemorate International Batten Awareness Day, BDSRA hosts a virtual 5k run/walk event. We encourage our community to participate by registering as a participant or a cheerleader. All funds raised during the registration go towards our mission: A world without Batten.
Sign-up your team and rally your community! BDSRA will have an activity coursemap that includes 9 days of activities kicking off June 1st, ending with the Virtual 5k Run/Walk on June 9th!
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BDSRA Welcomes New Staff Members
Database Manager- Pam Aylor
Pam Aylor joined the BDSRA team on February 1, 2022, as the Database Manager. She comes to us with over 25 years of programming and analysis experience, as well as almost 5 years of non-profit experience, most recently at a local food pantry where she worked in the Development department with their Customer Relationship Management (CRM) software.
Pam has a strong foundation of computer analysis, teaching and non-profit skills, which makes her a great fit BDSRA. She is married and has 3 grown children - 1 daughter and 2 stepsons. She has lived in Ohio her entire life and will always be a Cleveland fan – whether it be the Browns or the newly-named Guardians.
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Marketing & PR Coordinator- Patrick Kotnik
Patrick is a 2020 graduate of West Virginia University and brings valuable editorial and multimedia experience to the BDSRA team after previously working in journalism. He is thrilled to learn more about the Batten community through his position.
In his spare time, Patrick loves to spend time with his girlfriend and family. He’s also an avid fan of the Green Bay Packers, Cleveland Guardians, Cleveland Cavaliers, Pittsburgh Penguins, and WVU sports.
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2022 Board Applications Are Now Open
BDSRA Board Member Spotlight
John Patterson
As the grandfather of two children affected by CLN3 who live in Reston Va., I worked with my son to find information and support for the kids and their family. As a scientist, I first found and attended the 2016 NCL Conference. At that meeting, I learned about BDSRA and the work they do to support the families of our Batten kids. (Click here to continue reading John's Story)
Applications will remain open until August 31, 2022.
To learn more about BDSRA Staff and Board members, please visit: bdsra.org/about-bdsra/our-staff-and-board/
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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 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
Quarterly Grief Chat | 10 April 2022 | 7p ET |Virtual
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BDSRA understands that each stage of this journey is different, and we are here for you. This is an opportunity for loved ones to gather, share and support one another. Please consider joining us at 7:00pm EST on May 10th, 2022.
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BDSRA Summer Bash| 21 June 2022 |6 p | Virtual Zoom
Join us for our BDSRA Summer Bash June 21st! Activity boxes will be available for SIBs and affected children. Register by June 8th to receive your box in the mail and join us as we kick off summer!
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International AAE: Biotechs and NCL clinical research: Exploring our current Landscape | Q&A | May 5 2022 | 5 p ET | Virtual
Join us for Ask-An-Expert: Biotechs and NCL clinical research: Exploring our current Landscape
BDSRA and our international partners will be giving an overview of the current landscape. Please join us, Dr. Ineka Whiteman, Dr. David Pearce, and Dr. Jonathan Mink as we explore recent developments and the impact on NCLs.
Register with the link and join from Facebook Live or the webinar link that will be sent via email upon registration. Register with the button below.
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April Ask-An-Expert Recording!
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Check out last month's live recording of our Ask-An-Expert series presented in partnership with Courageous Parents Network.
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Advocacy Updates
RUSP Advocacy Wins-
Mississippi Signs RUSP Alignment Bill into Law
On March 16th, the Mississippi Governor signed HB 927 into law. The law implements a three-year timeline in which screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP) and ensures that the Mississippi Department of Health provides a report on the status of addition every 12 months addition is delayed. Mississippi is the first state this year to adopt RUSP alignment legislation and the eighth overall.
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BDSRA would like to express its support for Will’s Law (SB 710) and advocate for its passage by the Missouri legislature. Read our full statement of support:
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Research Updates from Industry Partners
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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Phase I/II enrollment open. More information at
https://www.clinicaltrials.gov/ct2/show/NCT05174039?cond=CLN3&draw=2&rank=5
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April 2022 Facebook Fundraiser Spotlight:
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 mdeboth@bdsra.org.
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Thank You BDSRA Community of Donors!
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.
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 continue that legacy of children and families.
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
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