October 2022 Volume 33, Issue 10
|
Introducing 4 New Members of the BDSRA Board of Directors!
|
|
|
BDSRA Foundation is excited to welcome four new members of the Board of Directors! Suzette James, Kyleen Douglas, Fernanda Leal-Pardinas, and Wayne Kiefer will each begin their terms in January 2023.
Get to know our newest board members by clicking the button below!
|
|
|
The 2022 Annual Appeal Launches Tomorrow! Here Are Some Creative Ways Everyone Can Support BDSRA!
|
|
|
As we approach the Annual Appeal and holidays, I am mindful of some families’ medical expenses, the need for new winter coats, and the cost of fuel. There are still many creative ways in which you can support BDSRA, and we are happy to help you with any of them.
One of the easiest ways to donate to us is to join Amazon Smiles. If you are already shopping with Amazon, some of the products you purchase could earn us a half percent at no cost to you! The supplies we buy help support our own work too! BDSRA has earned nearly $10,000 through September of this year. It’s easy to sign up for Amazon Smiles; simply click here to get started.
Where do you buy groceries? Kroger and other grocery chains have a similar program to Amazon’s. When you link your Kroger account to Kroger Community Rewards and designate BDSRA, a portion of your purchases earn income for BDSRA at no cost to you. The donations are sent directly to us to help provide programming for our families. If you would like to support BDSRA in this way, click here for more information.
|
|
|
Facebook fundraisers brought in enough money last year to cover the office rent! This is where the magic happens — supplies are stored and shipped, and virtual meetings occur almost daily. Facebook fundraisers bring in needed money and they spread awareness about Batten disease. You can set up a fundraiser for your birthday, International Batten Awareness Day (if you aren’t already forming a team), or an important anniversary. Raising money and awareness through Facebook is easy, and you don’t have to collect the money or send a check. Donations made through your fundraiser come directly from Facebook to BDSRA, and we are grateful. Click here for instructions on setting up a Facebook fundraiser!
|
|
|
Some families have taken to hosting their own events. From fishing tournaments to extravagant yard sales to bike rides, BDSRA has been the beneficiary of many events. The Freemason Wilmette Park Lodge 931 in Illinois is presenting a check this week, while we attend the Translational Research Conference for the Management of NCLS in Chicago. The following weekend, I will travel to the 20th anniversary of a Bowl-A-Thon at Rab’s Country Lanes in Staten Island, New York.
|
|
|
|
Do you or someone in your community organize special events for Batten disease? Let us know! We welcome the opportunity to attend and support the effort. BDSRA Foundation is always in need of more resources for supporting our families, research, and advocacy.
-Amy Fenton Parker, BDSRA Foundation President & CEO
|
|
|
BDSRA Announces Staffing Changes
|
|
|
BDSRA Foundation is sad to share that Vice President of Support & Advocacy Morgan DeBoth has left to pursue other opportunities. We are grateful for everything Morgan has done for the organization and most importantly, the Batten community, the past two years. BDSRA wishes her the best in her future endeavors.
We are committed to supporting the community in every way we can, and we welcome volunteers who are interested in helping us while we conduct a search for Morgan’s replacement. In the meantime, please feel free to contact Linda Barkhurst (Linda@bdsrafoundation.org), Patrick Kotnik (Patrick@bdsrafoundation.org), or Amy Fenton Parker (Amy@bdsrafoundation.org), 614-973-6011 (w) or 614-753-1200 (c).
We are excited to share that we are adding a new Database Manager, and more will be coming about our newest hire in the November issue of The Illuminator.
|
|
|
Meet with our Advocacy Committee!
|
|
|
Our Advocacy Committee invites you to discuss local and federal advocacy efforts, Newborn Screening, Rare Disease Week, how to share your story, and more!
Virtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET. The next meeting will be held on Sunday, November 20th!
Please email info@bdsrafoundation.org to get started!
|
|
|
|
Interested in Sharing Your Story?
|
|
|
The BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give this community a platform to share their stories.
Sharing your story allows BDSRA to help raise awareness for Batten disease and advocate for improvements and developments for our three pillars — Support, Research, and Advocacy.
Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org if you’re interested in sharing your story with BDSRA.
|
|
|
Do You Follow BDSRA on Social Media?
|
|
|
Want to see more BDSRA content? Don’t miss out on upcoming events, information, campaigns, and community posts! Follow @BDSRA on Facebook, Instagram, LinkedIn, and Twitter to stay in the know on all things happening in our Batten Community!
Click below to follow all of our accounts:
|
|
|
Share Your Perspective on Gene Therapy Products with The FDA!
|
|
|
The FDA Center for Biologics Evaluation and Research (CBER) and Office of Tissues and Advanced Therapies (OTAT) are holding an upcoming virtual listening meeting on Tuesday, November 15th. The FDA is seeking perspectives from patients, caregivers, advocates, and other important stakeholders about gene therapy products.
Registration is required to attend and anyone interested in speaking at this virtual event can request to do so during registration.
Click here to watch our latest #ToolboxTuesday featuring this event and/or click the button below to register!
|
|
|
View the Latest Batten Disease Research Updates!
|
|
|
Check out the latest Batten disease research updates on the BDSRA Foundation website! Visit this page by clicking the button below and visiting the main page or the “Research and Clinical News” section under the “Research” tab.
|
|
|
NOTE: BDSRA will have a summary of a recent visit with REGENXBIO on its website and social media channels in the near future.
|
|
|
Research Updates from Industry Partners
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
|
|
No update available at this time.
|
|
|
October 2022 Facebook Fundraiser Spotlight:
|
|
|
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. Thank 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.
Westley Myles David McKinley
Kayleigh Marie Holloway
Raelynn Faith Myers
To have your loved one’s name placed in The Illuminator please email info@bdsrafoundation.org.
|
|
|
|
Thank You BDSRA Community of Donors!
|
|
|
|
|
Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten Disease. We want to acknowledge the donors who gave so generously last month to our work. Together, We are Batten Advocates for a Cure.
|
|
|
To view the list of recent donors, please click the button below!
|
|
|
Your gift makes all the difference in the lives of families.
|
|
|
Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
View Message Online Link
|
|
|
|
.png)
.png)
.png)
