March 2020                                                                                        Volume 31, Issue 3
A Message Regarding COVID-19

Rare Disease COVID-19 Resources

It's important to listen to your healthcare professionals and follow all guidelines from the WHO and CDC. In addition to those resources provided by the WHO and CDC our partners in the rare disease community have provided a number of helpful articles and webinars. 

Below are a few of these resources. 

Protecting Medically Complex and/or Immune-Suppressed Children with Epilepsy from COVID-19 - hosted by DEE-P Connections, the International Foundation for CDKL5 Research (IFCR) and The Epilepsy Foundation of America

A Rare Response: Addressing the COVID-19 Pandemic - hosted by National Organization of Rare Diseases (NORD)
March 31st with recording to follow 

Taking Care of You: Self-Care in Challenging Times - hosted by National Niemann-Pick Disease Foundation Inc ( NNPDF) & the National Tay-Sachs and Allied Diseases Association Inc (NTSAD)
April 1st with recording to follow 

Rare Disease Day Wrap Up

900 Rare Disease Advocates
393 Meetings with Congress
227 Patient Organizations
1 Amazing Rare Disease Week!

Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will brought together over 900 patients, caregivers, and others in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 25-28, 2020, rare disease advocates had an opportunity to meet with Members of Congress and to learn about policy updates and best practices for successful advocacy.

Advocates from Florida, including BDSRA's Tracy Kirby and Donna Fogle, meeting with State Representatives 

BDSRA staff, board, and community members attended Rare Disease Congressional Caucus Briefing,  Legislative Conference, and the Hill Day of legislative meetings the last week of February 2020.   

Ohio Advocates, including BDSRA's Tauna, Colin, and Noreen, as well as Batten families meet with State Representatives

During these meetings, advocates encouraged their Members to join the Rare Disease Congressional Caucus; support the creation of a Rare Disease Center of Excellence at the U.S. Food and Drug Administration (FDA); and increase funding for the FDA Orphan Products Clinical Trial Grants Program and the Natural History Grants Program. In addition, they urged their Members to support various rare disease legislation and policies, including but not limited to: the Newborn Screening Saves Lives Reauthorization Act, the Better Empowerment Now to Enhance Framework and Improve Treatments Act, and the Medical Nutrition Equity Act. 

Batten community members Jarrod and Jessica Dickson along with BDSRA Director of Education and Advocacy, Noreen, met with representatives from Ohio 

You can learn more about Rare Disease Week and sign up for 2021 updates here .

Families at Rare Disease Week

We were very excited to have had so many Batten families join us in Washington DC for rare disease week! For some of them this was their first time advocating on the hill. 

Jarrod and Jessica Dicken share their experience with us:  "This was our first time attending the event. We were able to learn key information not only for advocating on the hill but how to advocate in our home state. We look forward to continuing the conversation with our local representatives.  It was extremely heartwarming to see so many people there, all with the goal of raising awareness of rare diseases."
Community of Kindness: Paying It Forward

John and River "Ducky" Barclay
The Batten disease community has shown time after time how strong and caring they are. They welcome in new families and let them know they are not alone, offering both guidance and knowledge. And when there is a loss, the support is like nothing else, they feel it with the family, often from afar. This story is one of support from the beginning of their journey to the end.

"Hi my name is John Barclay, my daughter is River Barclay. River was born on January 27th, 2010 as beautiful as can be. She was diagnosed with CLN2 Batten Disease on November 16th, 2017. She passed away November 18th, 2019.

When I was at my most desperate times in searching for things, devices, relief, quality of life help for her, I received some of the most amazing support from Batten families. I received a special Tomato Hi-Low seating system from a beautiful little and her family from Ohio. Fellow Cleveland Browns fans!! The emotions that course through me at this generosity knowing that River may only use it for a short time because she out grew it fast was amazing. The love we felt was vast.

So, I started thinking about that myself. We didn't start with a lot of the assistive or occupational devices that we had when she passed. It was a struggle to get them. But when I got them from insurance, at first my process and thought was that I will get them in a gender-neutral version. If a color was offered, I would get black or red or green or something like that. I wanted someone to be able to have it whether boy or girl. River's first car seat was red. Her second was pink camo. I had to get girly LOL. The first wheelchair we got was purple as was the second, but purple can be gender neutral, maybe? But always with the thought that these would go out into the world and help somebody when River passed. If they offered a spare, I would ask for one, like River's suction machines and food pumps. I still need get those out to littles. 

That's the technical thought that can be useful to you possibly. But, in my situation, the caveat was (and I didn't realize) how important that "Pay-it-Forward" would be for me. That gifting the items would be for me. River passed November 18th, her birthday in January was just a few months away. So at that time, looking in the near future, after the first weeks of no gravity in my life, I realized I needed the emotional boost, I needed something to enable me to get past that birthday event itself. Her death and her birthday so close together, I needed some internal support for myself. That sounds selfish, but I have to taken care of myself to take care of others. And so, I thought let's start giving these things away and the best way to feel good about that or better about that is to offer some of them out. But some of them I knew to offer to people who I knew needed them, they were/are I tougher life situations like I had been. People who I adored and admired. And that they would be useful and helpful. It was important for that. So, I offered her PPOD to a child, a young girl in Ohio. And I hope, I think, I've heard that it's made her quality of life a lot better. That belief right there is about the most, to date, useful thought or feeling I have. The other was to offer and get them out as fast as I could to people needed them or asking for them. People who reached out on the Batten Disease Facebook group. River's wheelchair if needed is going to go to the conference if I can get it on the plane. But someone still needs to contact me for it. The red car seat went to a beautiful little girl, I hope she grows into it. The pink camo one went to a beautiful young lady on the other side of the country. Her pulse-ox machine went to a handsome strong young boy in the middle of the country. And I adore that they are using them. To me I appreciate that they know the items were River's and honor them for being River's. But for me that was not intent.

As I mentioned I received some devices. One other was a red stroller. I don't know if gender neutral was the intent, or the young ladies favorite color. But that gave me the idea or reaffirmed it. I was in desperate times again. River's wheelchairs were giving her bruises as her movements became more out of control. She would get bruises if we tried to restrain her in the wheelchairs as well. And her insurance was balking at covering it forever. I was gifted a red stroller from a from a young lady who had just passed away. I still can't even equate what they felt or how I felt getting it or gifting it forward. But River's quality of life was so improved by it until I could get River her own, or a second one, as I was having trouble getting River's approved. We ended up sending that to a young girl and honoring the young girl that gave it to us by making name patches for it. Unfortunately, the stroller that was finally approved for River was received just a week before she passed. We donated that to enhance River's Make-A-Wish for the special needs class River attended. They use it every day and it's neat to see one of her friends getting strolled around in comfort. So that is another option too. The second bed I got for my home went to an elderly lady in the outlying parts of Washington. They are more deficient in resources, and it's comforting that I could be there for someone that desperately need devices to help.

But I know, and I hope River knows that she helped too. "

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! You can visit each fundraiser by clicking on the names above. 

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.

Batten Disease Support and Research Association | (614) 973-6013 | i | w