June 2022 Volume 33, Issue 6
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Dear Friends,
After many hours of intentional research, strategy, and planning, our organization is refreshing our brand identity. A big thank you is due to the BDSRA community members and partners. They participated in the varied focus groups and informed us that we needed to make this shift. And, of course, thank you to all our former and current board members who continue to be resources to us, especially throughout the rebranding process.
Our new brand will allow us to better support our purpose: to raise funds to provide education, resources, and research that will lead to a cure for Batten. I invite you to click here to view “BDSRA Foundation Brand Evolution” which will explain the research and reasoning behind our new brand strategy. It includes samples of our new logo and introduces our refreshed tagline: Batten Advocates for a Cure. To read the full press release click here.
We are committed to supporting our Batten community and determined to find a cure through science. We are confident that our new identity will allow us to do just that. I hope you are as encouraged by the future of the BDSRA Foundation as I am!
With Hope,
Amy Fenton Parker, President & CEO
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BDSRA Annual Family Conference 2022:
A World Without Batten
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Registration is still 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 very soon.
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2021 Impact Report Unveiled
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The BDSRA Foundation’s 2021 Impact Report is now available on our website! Included are letters from our President and CEO Amy Fenton Parker and Board Chair Darlene Royalty as well as 2021 highlights across our three pillars!
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New Memorials page is now live on our website, which means you are able to create or update the living memorial for your child or children. If your child’s memorial exists and you don’t wish to make any changes, you don’t need to do a thing. If you would like to have your updated child or children’s memorial pages ready for the memorial at the conference, please have all of your changes completed by midnight on July 3rd.
To claim or make edits to your child’s memorial, go to the Memorials page of the BDSRA website and register for an account. From there you can make all the creative additions you would like—from stories and photos to their favorite things. Detailed instructions are attached to this email as a PDF and are also available on the registration page.
We look forward to seeing the wonderful additions you include in these memorials and honoring the lives of your Batten children.
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BDSRA Staff Attends 2022 NORD Living Rare, Living Stronger Patient and Family Forum
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BDSRA President & CEO Amy Fenton Parker discusses her experiences and takeaways from the 2022 NORD Living Rare, Living Stronger Patient and Family Forum in Cleveland, OH below.
“This conference was different from most because it was for the rare patient. As a rare patient, it felt good to learn so many things I know but didn’t realize how many others struggle in the same way. It provided me the opportunity to better understand our families’ day-to-day and battles that consume so much energy. The connections we made at this conference really spread awareness about Batten disease. Some had heard of it but didn’t know much about it, others were unaware. I made connections with many others who work in the patient advocacy space—many who are parents of children with rare disease and are fighting for services, better healthcare, and a cure. I learned about the many services NORD provides families and some other organizations that also provide help to rare families in need. There is one non-profit who specifically focuses on providing transportation to families who have to drive more than two hours to get treatment. I have so many takeaways from which to choose. We got some good ideas for our own conference—like providing blankets and patient rest areas. We made some new connections with great people at NORD and other patient advocacy groups, which allowed us to spread awareness about Batten. I connected with a woman who I met at PPALS in Sioux Falls, and we decided to do our capstone together on patient care and translation of diagnosis, which we hope to publish. We listened to some great researchers who talked about trials and the importance of natural history studies.”
-Amy Fenton Parker, President & CEO
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Thank you for Participating in the International Batten Awareness Day 5k Run/Walk and Daily Activities!
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To the Batten community, friends, and allies,
On behalf of BDSRA and our international affiliates, thank you for your participation during our events for International Batten Disease Awareness Day. Thank you for not only helping us raise awareness but for sharing your stories and inspiring the Batten community around the world. With your support, a record 416 participants raised awareness by participating in the Virtual 5K. We are grateful for everyone’s advocacy and support and look forward to the upcoming hybrid conference!
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Visit the BDSRA Facebook page to view more photos from the Batten community participating in International Batten Disease Awareness Day activities!
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2022 Board Applications Are Open
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BDSRA Board Member Spotlight | John Ireland
When I was 12 years old, my younger brother was diagnosed with Batten disease. The following year I attended my first conference and instantly had 20 lifelong friends. At 15, I became a SIBs leader and realized I could now share the benefit of knowing I wasn’t alone with others. After 25 years of facilitating the 14-17 age group, I started teaching some of the younger SIBs how to get a room of teenagers to share their experiences. In 2019, I applied to join the board as the SIBs liaison, giving me a new angle to advocate for the group I’ve gotten so close to.
My first conference was amazing, Though I had great friends at home who offered great support, none could really understand what was going through my head. Being in a room with a group of young adults experiencing and feeling the same things made me feel normal. After hearing hundreds of SIBs experience the same challenges with their parents, we started the parent panel to share some of these challenges to improve their relationships.
After nine years living in the Bay Area, I will be moving back home to Colorado in January of next year. I recently purchased a house in Boulder and am excited to be one time zone closer to the staff and majority of the board.
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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 Annual Family Conference 2022 | A World Without Batten | July 8-10, 2022 | Hybrid
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Research Updates from Industry Partners
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On International Batten Disease Awareness Day, Collaborations Pharmaceuticals, Inc. was awarded grant by the the National Institutes of Health / National Institute of Neurological Disorders and Stroke to support its development of a treatment for CLN1.
Click here to learn more!
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No update available at this time.
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No update available at this time.
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June 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.
Rachel Shipp | June 2022
Oscar Jealous
Nov. 15, 2011- June 16 2022
Jessica Hynie | June 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 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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