To whom it may concern,

We, the board of directors of the BDSRA, are collectively sending a message out to the community today to give you all an update on a few matters.

First, as many of you know, one of our founders and our Executive Director for over 25 years, Lance Johnston passed away recently. There are not enough words on this page to describe his impact on this organization. He was instrumental in the success and growth of BDSRA and in helping families with support and care for their children. To honor Lance Johnston and his family, we will be starting the Johnston Family Memorial Fund to be used to help support our Batten families in some capacity. We will give out more specifics on this at a later date as we develop this fund.

2nd Staff Updates: The BDSRA would like to thank Tauna Batiste for her service to BDSRA and the Batten community.  She has chosen to move on to pursue other opportunities, and BDSRA wishes her success in her future endeavors.

We’d like you all to welcome Michelle Churchill as our new interim Executive Director. Michelle will be at this position while we conduct a search for a permanent replacement. Many of you may know Michelle in her previous work with BioMarin, where she recently retired. She’s also been a volunteer at some of our previous conferences. Her bio is listed below.

We would also like to introduce Morgan DeBoth. Morgan will be taking over the position of Director of Family Services. Morgan comes from a social work background and is committed to promoting equity and advocacy. Her bio is also below.

Other staff notes: Noreen Murphy has been promoted to Senior Director of Education and Advocacy. We thank her for her dedication to our families and her 6 years of service to the BDSRA. The BDSRA board also recognizes another staff member, Colin Montieth for his work as Development Coordinator.

Please welcome our new staff members Michelle and Morgan! Let’s also congratulate Noreen on her promotion as well as her upcoming wedding.

It is a perilous time in this country due to the COVID-19 pandemic and we also recognize the daily battle that is Batten Disease. We haven’t wavered from that mission to find a cure and we want you to know that we are united as ever in the fight against Batten Disease. The board of directors and the staff appreciates your efforts whether it’s hosting a virtual 5k or having your own fundraisers or volunteering. We know that your fight is our fight and together we can make this organization the best it can be.

If you have any questions for us regarding this news release please direct them to Trent Lewis by direct message or email. Trent is head of our communication sub committee for the board.

Thank you,

The Board of Directors BDSRA

Contact Information
(260) 667-4600

Michelle Churchill Bio:

Michelle is honored to join BDSRA. You may recognize her and her family as volunteers at past conferences and participants in local races and fundraisers.

Michelle retired last year after a 28 year career in medical and biotech sales and corporate training. Through an earlier position with a pediatric company, she was asked to serve on the planning committee for the Central Ohio Chapter of the American Lung Association which was the beginning of her interest in fundraising.

Michelle spent 18 years with BioMarin where she developed a passion for rare disease, advocacy, and education with an emphasis on the family journey. Her experience in working with families lead her and her family to become active with BDSRA, The National MPS Society and other small local organizations. A@er re?ring, she started substitute teaching outside of Pittsburgh and most recently was asked to develop and teach a professionalism curriculum for a technical school in Columbus.

Michelle received her undergraduate degree from The Ohio State University and is a lifelong fan. She and her husband Don have been married for 30 years and have two adult children, Lauren and Owen who also work in healthcare fields. Michelle and Don enjoy traveling and are working on a goal to visit all the presidential libraries, Big 10 stadiums, and major national parks.

She is looking forward to supporting the organization, staff, and families.

Morgan DeBoth bio:

Morgan comes from a social work background and is committed to promoting equity and advocacy. She joins BDSRA with seven years of professional experience in the nonprofit field. She has advocated for individuals of all ages and brings with her a passion for serving the community.

Morgan received her undergraduate degree from Ball State University located in Muncie, IN. She began her work as a victim’s advocate for women and children whom experienced domestic violence and/or sexual assault. In 2016 she completed her certificated in Cognitive Behavioral Therapy from the Beck Institute. This inspired her to continue to advocate for healthy families and for beHer quality of life for all individuals. Her most recent position at Gladden Community House as the community liaison launched her into the Columbus community and allowed her to fundraise, network, write grants and advocate for the benefit of the local community and its members.

Morgan currently sits on the board of the Franklinton Arts District and pours her heart into the advocacy of the arts as a healing medium to those whom are most at-risk.

Morgan brings her passion for serving others, fundraising, community connecting, and advocacy to her new role of Manager of Family Support with BDSRA. In her free time, she volunteers with her local community, takes watercolor paint classes, explores new hiking trails, and spends time in her vegetable garden.