January 2017                                                                                                                                         Volume 28, Issue 1
In This Issue
SIBS Raise Money 
for Research


There is still time to support the Batten SIBS during their Princess Run next month at Walk Disney World.  Six amazing Batten siblings have registered to run the Disney Princess ½ marathon or 10k at Walt Disney World on February 25th and 26th, 2017. They are Megan Chandler, Addie Heuchan, Kody Maynard, Mike McDonough, Jeni Montavon and Sara Thompson. Each of them has had a sibling that has been diagnosed with Batten Disease. Batten Disease is a rare, fatal, neurological disease affecting children of various ages. Currently there is no treatment or cure and it is always fatal.

You can do a virtual run with the group to show your support. 

If you have bracelets in honor or memory of your child, please send one to the BDSRA at 1175 Dublin Road, Columbus, OH 43215 and they will be worn by the runners on race day. Bracelets must be at the office by February 15, 2017.

Together this group runs in honor or in memory of their siblings. They run for hope. They run for a cure.

Click here to register

Rare Disease Day


Rare Disease Day takes place on 
the last day of February each year. The main objective of Rare Disease Day is to 
raise awareness amongst the general public and decision-makers about 
rare diseases and their impact on patients' lives.The campaign targets primarily the general public 
and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

To read more about Rare
Disease Day visit



In Loving Memory
BDSRA Staff Here to Help
     
The hallmark of BDSRA's mission is support for families experiencing Batten disease while at the same time, encouraging and funding researchers around the world.  We are fortunate to have in place exceptional people whose passion is to help families - providing practical solutions to problems, lending a listening ear and inspiring them to be part of our community.

2017 Staff Changes

After several weeks of internal planning, our staff developed a roadmap for matching their best skills, and desires to help, with tasks and programs families need.  

Click here to continue reading
Staff Q & A
Noreen Murphy

Where are you from?
I grew up in Findlay OH, but have been living in Columbus for the last couple years.
What are you most excited about doing at BDSRA this year?
I am really excited to compile all of the resources, expert opinions, and knowledge we have in the Batten community into resources available to everyone. I am also excited to spend the year celebrating all of the wonderful things BDSRA has accomplished in the last 30 years!
Random fact about yourself
I am a casual golfer, I started in high school and continued onto the golf team my freshman year of college. I'm a bit out of practice but love playing a nice relaxing round.
Goal for yourself 
(personal or work)
My goal for this year is to go to two new places a month. I love Columbus and I feel like there are so many museums, restaurants, and activities that I need to try out.

Christina Clark

Where are you from?
I am originally from Cleveland, Ohio. Columbus is now where I call home.
What are you most excited about doing at BDSRA this year?
I've been fortunate enough to meet a few families, partners and the BDSRA team members. I'm most excited to continue getting to know them and have the opportunity to meet and collaborate with amazing people in our common goal.
Random fact about yourself
In 2016, I went from not being able to keep an aloe plant alive to successfully planting herbs from seed and having a thriving collection of plants in my bay window at home. Having plants around just makes my day, it's the simple things!
Goal for yourself 
(personal or work)
"You learn faster when you tell less, ask more and listen most."  While I don't recall who said it, one of my goals in 2017 is to live it.
 
Click here to continue reading

BDSRA Board of Directors Welcomes New Member
     
BDSRA board elections were held in November 2016, and the board is happy to announce that after collecting fact sheets from the four who applied , they have decided to accept those very qualified applicants as the 2017 BDSRA board members.  By doing so, BDSRA has saved approximately $400 in mailing and processing the ballots.  We are excited to use that money to offer additional travel stipends for the 2017 Family Conference.

We welcome returning board members Rob Geer, Barbara Wuebbels and David Pearce; and new board member Jennifer Dilley, a CLN2 mom.  Thank you for your dedication to BDSRA!
Quick Links
BDSRA Family
Resource Corner
 Bereaved Batten parents Warren and Brenda Pfohl know how challenging it can be to have a child with special needs. They understand what it is like for a parent to work tirelessly to make their child's life as wonderful as possible and are well aware that often times parents and caregivers are so focused on their loved ones that they forget to take care of themselves.  It was with this in mind that the Pfohl's started David's Refuge, an organization that "...was formed in honor of David to encourage parents to keep pressing on. As our guest, our prayer for you is that you will be restored and refreshed to fight the good fight, to finish the race and to keep the faith."
 
On their website they explain "As parents of a child with special needs, we understand the feelings of isolation, exhaustion, and stress families experience in their role as caretakers. We've wrestled with questions of faith, felt the sting of broken dreams, and have questioned whether what we were doing really mattered."
 
Their mission is to provide a place of respite free of charge for parents and guardians of children with special needs or life threatening medical conditions where they will be refreshed, restored, and renewed in their role as caregivers. David's Refuge allows parents and other caregivers much needed time to rest, reflect and recharge from the stress of full time care giving. They want others to know three things: that they are not alone, what they do matters, and there is a God who loves them.
 
To learn more about David's Refuge and the Pfohl's visit davidsrefuge.org.
 
Warren also writes a wonderful blog that touches on many aspects of having a child with specialneeds, https://caregiversrefuge.wordpress.com/
 
BDSRA Family Conference
We are excited to be hosting the family conference in Pittsburgh PA this summer, July 6-9.  The conference  will be at the The Wyndham Grand Pittsburgh Downtown, and registration will be opening the end of February.  

This year we celebrate the 30th anniversary of BDSRA, and would love to see old photos and hear stories you may have.  Please email share30@bdsra.org for more information.
Donor Gifts
The Batten Disease Support and Research Association has been remembered many times in the past two months by families and friends affected by Batten disease.  
 
Batten Disease Support and Research Association | (614) 973-6013 | tkirby@bdsra.org | http://www.bdsra.org
1175 Dublin Road
Columbus, OH 43215