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December 2018                                                                                        Volume 29, Issue 10
Thank you for a successful Giving Tuesday!

Grateful for the outpouring of love and support for #givingtuesday 2018. 

Your donations give more than financial support for our family, research and advocacy programs, they fill us up with joy and inspiration.  Thank you so much! 

Epilepsy Awareness Day at Disneyland

BDSRA attended Epilepsy Awareness Day at Disneyland in November.  This was a great opportunity to educate physicians and clinicians, as well as raise awareness of Batten disease. 

The three day event hosted over 3,200 attendees, many of them families with a disease that includes an epilepsy diagnosis.  Being able to share stories and learn how to best serve the community is one of the many reasons BDSRA attends these events. 

National Society of Genetic Counselors Meeting

The National Society of Genetic Counselors held their 36th annual meeting in Atlanta last month, and BDSRA was happy to once again attend and meet so many of the genetic counselors that know our families.  

There is great interest in early diagnosis, and this was a great place to share knowledge with those who will be doing this. You can see the conference schedule here and in the future they will post conference recordings here. 


JNCL and Education Meeting





















In November BDSRA was in Denmark for a meeting of the JNCL Education Project. We were able to learn from education experts from all over the world and get a preview of the 500 page Juvenile Neuronal Ceriod Lipofuscinosis, Childhood Dementia and Education book. 

BDSRA has been a part of this project for a number of years and is excited to be receiving copies of the book next year. A huge thank you to all of the families that participated in the 2015 survey that has contributed to this work. 

Books will be available for families at the 2019 BDSRA Annual Family Conference and by mail after July. 
Give the Gift of Hope 

Want to make a contribution in the name of someone special? Use one of our stocking stuffer graphics to personalize and give the gift of hope this holiday! After you complete a donation, follow this link to printable versions of each of the below stocking stuffers designs for you to fill out to share with your loved ones. Happy Giving!

Resource Corner
                
The holidays are a trying time for any family but especially those experiencing grief. Below we have collected some resources that we hope will be helpful. 


BDSRA Ask-An-Expert Chats:
Holiday Grief
Supporting Siblings Through the Grieving Process 

Courageous Parents Network (CPN) has many videos, posts, family stories, and resources for parents in all stages of grief. 

What's Your Grief is a website run by mental health professionals and covers a wide range of grief topics. Below are just a few categories from their site. 
Holidays and Special Days
Memorials and Remembrance 
Coping After the Death of Your Child

You can find a few additional resources and book recommendations on our website. 

BDSRA 2018 Grant Award Announcement

At BDSRA, we do more than impact the drug development process and regulatory pathway - we have contributed to a strong foundation of research tools like assays, bio samples, cell lines, and natural history, that are used as the building blocks for many scientific projects  in different stages. Facilitating the creation of tools that speed up the prediscovery and preclinical stages of developing a treatment is a unique asset our community provides.

Because of your time and treasure, we have grown to a place where multiple clinical trials are on the horizon and many more research projects are being done. We have and are continuing to change the course of the disease through our work.


Each year, BDSRA invites proposals from over 200 scientists working in the field to fund the most promising basic and translational (moving to clinical trial) research.  Each proposal is peer-reviewed by experts in lysosomal diseases at universities, children's hospitals and in the pharmaceutical industry to provide well-rounded reviews. This year's focus was on Biomarkers. 

We are honored to partner with Drew's Hope and Noah's Hope/Hope4Bridget to fund this year's awardees:

Dr. David Sleat  from Rutgers, The State University of New Jersey working in CLN2 on a project entitled  Blood-based biomarker discovery for LINCL.

Dr. Erika Augustine from  University of Rochester Medical Center  working in CLN3 on a project entitled  Developing Neuroimaging Biomarkers of Progression for CLN3 Disease.

Dr. Trevor McGill from Oregon Health & Science University working in CLN7 on a project entitled Retinal autofluorescence as a biomarker of disease progression and treatment efficacy in a non-human primate model of CLN7 Batten disease.

Dr. Wendy E Heywood from University College London working CLN2 on a project entitled Biomarkers for CLN2 Disease Treatment Monitoring and Disease Severity.

Recent Fundraising Events



This month we have new Facebook fundraisers organized by:
We are so excited each day to log in and see your names growing. Thank you for sharing and supporting our mission on social media!
Support BDSRA's Annual Fund

BDSRA is the only organization that does it all. Supporting families directly, funding and facilitating scientific research, and advocating for patients in the drug development process.   When you give today to support BDSRA, you are contributing to these crucial needs in the community. There is not one day that we aren't on a quest to find a cure and be there for families every step of the way as we get there.  The Batten disease landscape looks very different today than it did five years ago.  Your contributions were able to create this change - we cannot do this without you. 


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. 
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org
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