May 2022 Volume 33, Issue 5
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International Batten Awareness Day 5k Run/Walk Registration!
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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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Haven’t joined a team yet? Join any of the ones below!
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Spread awareness with us by participating in our daily activities starting June 1st leading up to International Batten Disease Awareness Day on June 9th! Use #BattenDay2022 and tag BDSRA and we will share your posts!
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Another way you can help us spread awareness is sharing what motivates to move this June 9th on your racing bib! Print out the bib and write what motivates you on it, and then share! Use #BattenDay2022 on social media and tag BDSRA. You can also email your photos to BDSRA at info@bdsra.com.
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BDSRA Annual Family Conference 2022:
A World Without Batten
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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.
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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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BDSRA staff attends PPALS Conference in Sioux Falls, SD
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Along with many other conferences, the Professional Patient Advocates in Life Sciences (PPALS) PACT course came back to life in May. PPALS’s mission is to advance Patient Advocacy as a profession and serve as a catalyst for positive change by bringing concerns and needs of patients to industry, providing greater visibility for individuals in the Patient Advocacy field to the corporate level and encouraging drug development and related companies to establish this function where it does not exist. It includes two tracks each for Industry and Patient Advocacy groups.
Morgan DeBoth and I were excited to participate in Track I of the certification process with other patient advocacy groups and industry partners in Sioux Falls, South Dakota. The courses lasted nearly a full week of curriculum encompassing everything from the history of patient advocacy in rare disease to drug development and the inclusion of patient voices in the process. The complete program includes a two-year process with a capstone project to receive certification.
BDSRA’s Vice Chair, Barb Wuebbels, RN, MS, is one of the founders of PPALS, and the program is hosted by Sanford Research, where BDSRA’s board member Dave Pearce, PhD, serves as President of Innovation, Research, & World Clinics. We were glad to spend time with them both while there and get to know other members of the PPAL faculty. We made some new friends, great contacts with industry partners, and other non-profits as well.
We stayed on through the weekend for the 12th Annual Great Plains Hybrid Rare Disease Summit, where we met a new industry partner looking into Batten disease, a new family in our Batten community, and how to better utilize the CoRDS registry for BDSRA and our families. Both events were a great investment for BDSRA, and we look forward to going back for the second track.
-BDSRA President and CEO Amy Fenton Parker
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2022 Board Applications Are Open
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BDSRA Board Member Spotlight | Donna Fogle
As a newly single parent, once I pulled myself together from the shattering angst of my daughter’s Batten diagnosis, this unimaginable journey began. I had absolutely no clue how much life was going to change after I heard those dreaded words. She was only two years old, and I had never even heard of Batten Disease.
(Click here to continue reading Donna’s Story)
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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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Courageous Parents Network: “UNSEEN: How We’re Failing Parent Caregivers and Why it Matters” | Limited Private Window Screening and Live Discussion | 2 June 2022 | 8 p ET | Virtual
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Courageous Parents Network is offering a limited private window screening of a new documentary titled, “UNSEEN: How We’re Failing Parent Caregivers and Why it Matters.” A live discussion will take place on Thursday, June 2nd at 8 p.m. ET. The streaming window began on May 30th and lasts until June 2nd.
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BDSRA Summer Bash | 21 June 2022 | 6 p | Virtual Zoom
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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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May Ask-An-Expert Recording!
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Check out last month’s live recording of our special International Ask-An-Expert edition presented by BDSRA President and CEO Amy Fenton Parker and a panel of Batten experts discussing the current state of biotechs and NCL clinical research.
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RUSP Advocacy Wins
Maryland passes Newborn Screening Law
On May 12th, the Maryland Governor signed HB 109 and SB 242 into law. The law, referred to as RUSP alignment legislation, implements a two-year timeline in which screening must begin for new conditions added to the federal Recommended Uniform Screening Panel (RUSP). Maryland is the third state to adopt RUSP alignment legislation this year and the tenth overall, resulting from increased advocacy efforts in recent years. Read more here: https://everylifefoundation.org/maryland-passes-life-saving-newborn-screening-legislation/
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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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May 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.
Enes Erdem | May 2022
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!
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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 continue 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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