February 2018                                                                                        Volume 29, Issue 1
A Community of Kindness

The BDSRA staff is constantly in awe of how kind our Batten community is. Kindness does not have to come as large gesture, nor does it have to cost money. It can be a nice note, comforting words, or a helping hand. The Batten community is full of incredible people who are constantly helping one another. You send sweet messages, answer hundreds of questions online, are welcoming, and generous. We often hear from people outside of our community that we have the most warm and caring families they work with.

To keep us all thinking of and spreading kindness we wanted to highlight a story from our Batten community. We hope to hear from all of you about your experiences.

Continue reading about our community of kindness here.

End of Year Giving 

Thank you for showing your commitment to families impacted by Batten disease through your contribution to our End of Year Giving campaign. None of our work could be done without the incredible support of donors, and we are especially grateful you have chosen to continue giving year after year. Your donation is helping to connect families with clinicians and education consultations,  fund and facilitate research, to find support newly diagnosed and bereaved parents, the SIBS program, Ask-an-Expert chats, Equipment Exchange program, and phone consultations, community resources. Your contribution allows the BDSRA staff members to facilitate progress in the areas of scientific research and advocacy; creating the building blocks for clinical trials and being the voice of the patient in the drug development process.

With deep gratitude,

New Year, New Address

The start of the year at BDSRA coincided with a move to a new address. You will now find us at 2780 Airport Drive, Suite 342, Columbus, Ohio 43219.
We ask that you please send all mailed correspondence and donations to this new address and update your contact records in all ways that are applicable to you.

  • Remove 1175 Dublin Road from your address book and replace it with our new 2780 Airport Drive address.
  • For those of you that contribute via your employer or a financial planner, please forward this email to them and include a message to ask that they update The Batten Disease Support and Research Association's address to 2780 Airport Drive, Suite 342, Columbus, Ohio, 43219.
  • Recycle any old envelopes from us that contain our 1175 Dublin Road address
We are excited to be able to serve you better at our new address and thank you for your efforts to update our information in your records. If you have any questions, please don't hesitate to reach out to us at info@bdsra.org or to any of our staff members directly. If you find yourself in Columbus, Ohio we would love to have you in for a visit!
Board Meeting Recap
The BDSRA Board of Director's meeting was held January 26 through 28th at the Eaglewood Resort -- site of the 2015 Annual Conference.  Highlights of this year's winter meeting included:
  • Welcoming newly-appointed member, Chad Killen, who has been a member and leader of the SIBS program for many years.  We welcome him and the expertise and commitment he brings.
  • Discussion and approval of the 2018 budget.
  • Review of qualitative interviews with families, researchers, family foundations, and biotech partners related to the BDSRA strategic planning process set to be unveiled in the first half of 2018.
  • Board and staff training provided by fundraising consultants on cultivating major gifts.
  • Review of upcoming events -- Rare Disease Week February 26- March 1.  BDSRA will have staff in Washington D.C. for legislator visits, Rare Disease Caucus Meeting and on March 1st, Executive Director, Margie Frazier, will speak at the National Institute of Health Rare Disease Day Celebration.
  • Plans are well underway for this year's family conference in Nashville, July 19-22.  Registration will open March, 2018 for activities and reservations at the Nashville Marriott Airport.
  • Research Letter of Intent will go out in February with focus on innovative technologies in biomarker development.
  • Discussion of future research direction and campaign for full-time scientific officer at BDSRA.
The next in-person Board of Directors meeting will be on July 18th in Nashville.

Rare Disease Day

February 28th is Rare Disease Day 2018! Below are a few ways you can get involved.

Join advocates, patients, and parents from all over the country on Capitol Hill for a week filled with advocacy events. Click on the title above to sign up for events and find out more information about Rare Disease Week.

Follow Rare Disease Day and join their Hands Across America Campaign on social media. Throughout the day they will be posting about rare disease. They also provide sample rare disease day posts and letters you can send to your local newspaper. 

Visit the Global Genes World Rare Disease Day page for more tips on how you can participate in Rare Disease Day, including their "I Love Someone Rare" social media profile picture frame

BDSRA Executive Director, Margie Frazier, PhD, will be speaking on the National Institutes of Health Rare Disease Day Panel, Collaborating for Successful Research on March 1st at 10:45am EST . You can watch the live stream of the panel here at the time of the event. 

2018 Family Conference

P lanning is well underway for the 29 th Annual Family Conference July 19-22 at the Nashville Airport Marriott. We are grateful for the incredible support from this year's host families. Several families joined us at the kick-off meeting in November (Frazer and Dana Gieselmann, Barrett and Laura Betts, Randy and Sherry Hatchett) and many more have been working hard with updates via email and phone (Rick and Katie Godfrey, John and Kirsten Swindall and Dennis and Karen Watson).
Conference host families provide support in valuable ways to help make the event a great experience for all the families traveling (sometimes across the country!) to attend. The relationships on the ground in every city that the conference goes to are crucial. We can't thank them enough for volunteering to serve in this way. We are looking forward to the upcoming planning meeting in March and to seeing everyone in July!
In the meantime, keep an eye out for the conference registration link in your email and Facebook feeds, it will go live at the beginning of March. 

International Batten Awareness Day

This year BDSRA is excited to join our friends across the globe in celebrating the first 

International Batten Awareness Day  
June 9, 2018! 

Stay tuned for more details about International Batten Awareness Day and ways we can celebrate together.
Resource Corner
This month we are highlighting the Courageous Parents Network (CPN).  CPN is an organization created by families, for families, to support, guide and strengthen them as they care for very sick children. 

Their website contains advice, articl es, and guides built by parents and pediatric care providers to help families throughout their care journey. 

A few of their recent guides:
-Making Critical Care Choices
-Navigating the Hospital
-Coping with Anticipatory Grief
-A Framework for Making Difficult Descisions

In addition to these guides, there are videos, chats, and blog posts from parents and family members who are caring for their sick loved ones.

Like their Facebook page to read family stories and watch their live video chats. 

In Loving Memory 

Remember with us those we have lost from Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

View names of those recently passed
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
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org