|
November 2019 Volume 30, Issue 11
|
|
Meet the Team: Tracy Kirby
Tracy Kirby is the Director Family Services at BDSRA. Tracy works closely with families affected by all forms of Batten disease throughout the course of the disease and into bereavement. Tracy is highly experienced in facilitating logistics and providing the patient voice in clinical trials. Her experience spans the course of clinical trials starting with recruitment for early research studies through post-approval activities. Tracy has coordinated focus group meetings, relocated families, advocated for insurance coverage, and supported families one on one. In addition to ongoing work with families participating in clinical trials, she also assists with resource connections, clinician referrals, carrier testing, consultation on family fundraisers for BDSRA, the family emergency fund, education and IEP needs.
Tracy is just a phone call or email away if you need help finding a resource or if you just need someone with. She can be reached at
[email protected] or 614-973-6013.
|
|
Child Neurology Society (CNS) Annual Meeting
The Child Neurology Society Annual Meeting is the meeting of choice for child neurologists and professionals in other fields of study related to neurologic and neurodevelopmental disorders in children and adolescents.
BDSRA exhibits at this conference in order to bring awareness of Batten disease to clinicians and to connect with those who treat Batten patients from all over the world!
We took selfies with as many Batten doctors as we could find!
Click here to see them
|
|
Resource Corner: Hannahtopia
Meet Hannahtopia!
"At Hannahtopia we provide products to bring a little "happy" to children with special needs and facing medical challenges. Happiness is health and helps with the healing process! Created by a special needs mom for special needs families.
Hannahtopia products brighten life for children with special needs and medical challenges as well as their families! These products take children's minds away from the sterile medical environments and to a fun, colorful, HAPPY place!
Hannahtopia offers a variety of products including:
- Our signature NillyNoggin,
- Soft colorful comfy blankets (including our exclusive Minky cloths!)
- One-of-a-kind handmade pillowcases,
- Fluffy animals with adoption certificates,
- Quality g-tube accessories,
- Plus toys, and therapeutic products, and gift subscription options for a variety of products.
All carefully selected for their safety and function for children with medical conditions.
With Hannahtopia products, special needs families receive:
- Comfort that supports them,
- Fun and color to bring HAPPY to their days, and
- Safe and functional items designed for their unique needs.
We Are Just Getting Started!
Here at Hannatopia we will continue to add new products, carefully curated by our team to ensure fun, color, comfort, safety, and function. We would love to hear your recommendations - please contact us with products we could offer to families of children facing medical challenges!
Every child should enjoy the benefits of products that are functional for their medical needs and fun, colorful, and child-appropriate at the same time!
Happiness is healthy and helps with the healing process."
|
|
NORD Rare Diseases and Orphan Products Summit
|
|
 |
|
2019 NORD Rare Diseases and Orphan Products Breakthrough Summit | Highlight Reel
|
|
The NORD summit was once again a wonderful success and a great meeting for BDSRA to attend. Staff was able to learn from other rare disease advocates and share our experiences.
"
The NORD Rare Diseases & Orphan Products Breakthrough Summit is the largest and most dynamic rare disease conference of the year, where attendees can hear directly from and interact with patient advocacy groups, FDA and NIH senior staff and representatives from leading companies. Don't miss your chance to discuss with the key thought leaders in rare disease and orphan products!" - From the NORD website.
|
|
BIO Patient and Health Advocacy Summit
In October BDSRA Director of Education and Advocacy, Noreen Murphy, attended the 2019 BIO Patient and Health Advocacy Summit in Washington, DC. This meeting was a great opportunity to learn about the impact of upcoming elections on health policy and ways our community can engage legislators to make our voices heard.
To learn more about BIO and the conference you can visit their website.
"The BIO Patient and Health Advocacy Summit brings together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders for two days of robust programming to discuss timely policy issues and share best practices. The Summit also provides invaluable networking opportunities to advance partnership among stakeholders in the healthcare ecosystem. The Summit convenes more than 320 attendees from over 200 organizations."
|
|
BDSRA Memorial Information Request
We were touched by your response to the new Memorial, and want to gather as much information as we can for the conference next summer.
As many of you know, this Memorial has the capability to tell a story and share pictures. Please click here to share the story of your loved one. If you completed this form previously, please do so again as this collects even more information than before.
All responses must be submitted by December 15th.
Visit our website to read more about the Memorial. If you have any questions please contact Tracy Kirby at 614.973.6013 or [email protected].
|
|
A Special Remembrance
During the holiday season, we have special remembrance all of our Batten stars. Available now in our store are memorial memento angels crafted from our former memorial panels. These angels are perfect to adorn you and your loved ones Christmas tree and homes this season.
You can purchase memorial mementos in the
BDSRA Store.
|
|
Battling Batten Disease: 5K Run and Family Walk
Battling Batten Disease 5K had another outstanding year with tremendous success. Led by volunteer Laura Hull in memory of Celia Betz, this year's 5K raised nearly $16,000! The run was hosted in Columbus and features a professionally timed run, mile walk and kid's fun run. To see more pictures and find out how you can join the fun next year, visit The Battling Batten 5K Facebook page.
Kudos to Laura and her team for a fantastic job well done!
|
|
This month we have new Facebook fundraisers organized by:
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!
|
|
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.
|
|
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.
View recent donor gifts
|
|
Your gift makes all the difference in the lives of families.
|
|
