January 2021 Volume 32, Issue 1
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BDSRA Selects Amy Fenton Parker as New Executive Director
Batten Disease Support and Research Association, along with the BDSRA Board of Directors, is pleased to announce the selection of a new Executive Director to further their vision of accelerating science and providing vital family support services.
The hiring of Amy Fenton Parker comes after an extensive search to find a compassionate and accomplished leader to guide the organization as they implement a plan of strategic growth in grant programs, collaboration in research and development as well as outreach and expansion in advocacy initiatives. Parker’s passion and affinity for sharing the stories of need with those who most want to support the impact created from their gifts will be a tremendous asset to BDSRA’s mission.
A note from Barb Wuebbels, Vice-President of the National BDSRA Board of Directors:
“We look forward to Amy growing our relationships with the scientific community and family foundations. Both groups are critical to our mission of providing disease education, furthering clinical research, and supporting our patients and their families.“
Contact Info: Amy Fenton Parker, 614-973-6011 or afentonparker@bdsra.org
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The BDSRA Board and staff wanted to take a moment to express our gratitude to Michelle Churchill who acted as Interim Director of BDSRA since September of last year.
We are so grateful for Michelle’s dedication to the Batten community and her help in our time of need. Wishing Michelle the best (and rest) during her retirement!
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A Fore The Journey Fund Story
The Fore The Journey Fund is a joint collaboration with the BDSRA and the ForeBatten Foundation. This unique grant offers Batten families experiences, memberships, and gifts in the hopes of providing happy moments.
For this batten family, listening and being read stories brings immense joy to their son. Fore the Journey was able to provide an audible membership and a kindle so he could listen to stories or share one with his sister.
Please complete the short application at https://www.bdsra.org/fore-the-journey-fund/ if you have an idea of an item or activity that would bring joy to your family
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Research Updates
A message from Neurogene:
CLN5 Community members,
BDSRA would like to invite you to an opportunity to partake in a focus group hosted by Neurogene for CLN5 families. If you would like information about the opportunity. Please email Morgan DeBoth at mdeboth@bdsra.org or you can reach out to Gay Grossman, Director of Patient Engagement with Neurogene, at Gay.Grossman@Neurogene.com.
From the University of Rochester Batten Center
Research Study Opportunity: Inform processes related to the return of individual data
The University of Rochester is interested in understanding stakeholder perspectives on the return of individual research results. Because you are a Parent of a child with a rare disease you may be able to provide valuable insights and invite you to participate in
this study.
The goal of this project is to develop guidance that will inform decisions and processes related to the return of individual results. This project is funded by the National Institutes of Health.
The study involves one interview that takes 60 to 90 minutes. The interview will be conducted by Zoom or telephone.
Participants receive $40 compensation for completing an interview.
To learn more about this study, please contact the study team at 585-738-7811 or by email at ethicalRoR@urmc.rochester.edu.
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This month we have new Facebook fundraisers organized by:
- Zensiert Fragen Antworten
- Casey Dewey
- Darian Hawkins
- Carol Johnson
- Laura Johnson
- Brian Lehrman
- Jessica Mize
- Lissette Perez
- Paulette Schramm-Alves
- Nori Morgan Weaver
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.
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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.
Daniel Brown
March 11, 2011- January 5, 2021
Cody Mulligan
October 23, 1999 - January 7, 2021
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
You can view recent donations to BDSRA here.
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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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