October Newsletter

Photo Request

BDSRA is updating our marketing materials and online graphics and would love to include photos of Batten loved ones and Batten families. Generally high-resolution photos work best. These would include any photos from professional photographers or taken with a professional camera.

Photos can be from families from any country and can be of loved ones that have passed.

If you give us permission to use them in print materials, the website, social media posts, and other multimedia pieces please email them to Morgan at mdeboth@bdsra.org

Resource Corner: Enabling Devices

Enabling Devices is a great website for finding assistive technologies. Below is the description from their website.

"What can you do today? What do you want to do tomorrow? Discover a range of products that put goals within reach for people of all abilities and ages. Working with individuals, parents, teachers and therapists, we find – or invent – the devices, toys and tools that help build more joyful, fulfilling lives. From learning and play, to communications and independence, our products help make the impossible, possible."

In particular recently we at the office have been looking into the Tactile Symbol Communicator and the Totally Tactile Communicator.

Do you have a favorite resource or website you'd like us to share with the community? Email Noreen at nmurphy@bdsra.org.

Upcoming Webinars & Conferences

Epilepsy Awareness Day at Disneyland

Cost: Free

Dates: November 2nd and 3rd, 2020

The 8th Annual Epilepsy Awareness Day at Disneyland “EADDL”, including a packed Education Expo is now virtual! The EXPO will feature Non-Profit support groups, Epilepsy centers, Drug and related product manufacturers, seizure dogs and their trainers, and epilepsy professionals from around the world. Education sessions will include Epilepsy 101, Building a IEP, Anti-Epileptic Drug, etc.

https://epilepsyawarenessday.org/event-info/information/

Cambridge Rare Disease Network RAREfest20

Cost: Free

Date: November 28th 2020

A virtual interactive science, technology, advocacy and arts exhibition with a rare twist. Visit exhibition stands, get involved with live demos, talks and panel discussions, view rare art, films, take the scavenger hunt challenge and more…

https://www.camraredisease.org/rarefest20/

Advocacy Update: Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill has been rescheduled to July 19th-July 22nd 2021. During the week that we would normally be in Washington DC RDLA will be hosting a Rare Across America event.

Make an impact on federal policy from close to your home.
Share your rare disease story.
Meet other rare disease advocates.

Registration for 2021 will open on November 16, 2020.

WHEN: February 22-March 5, 2021

WHERE: Virtual meetings with your Members of Congress and Virtual Advocacy Events

WHAT: Rare Disease Legislative Advocates (RDLA) staff organizes virtual meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.

No prior advocacy experience is necessary.

Registration for this event and all RDLA events are free for rare disease advocates.

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.

Luke Watson

9/17/1992-6/20/2020

Anne ‘Annie’ Marie Allio

10/4/1998-10/19/2020

Deshawn Thomas
2/24/2011- 10/1/2020

Oscar Baugh
9/19/20

To have your loved one's name placed in the Illuminator please reach out to Morgan at mdeboth@bdsra.org.