Holiday Season 2025                                             Volume 36, Issue 11

NOTE: This is the last edition of The Illuminator Newsletter until the end of January/early February. 

Whether you donated, shared our posts, spread the word, etc., you helped make a difference for the Batten disease community by helping us surpass our $2,000 Giving Tuesday goal. Thanks to you, our Annual Appeal campaign is off to a hot start. Let’s keep it going! Make an impact on Batten disease Support, Research, and Advocacy today by donating to the BDSRA Foundation. Feel free to share the links to the buttons below!

Stay tuned for further updates and more information! For now, read the full press release below, and learn more by reading Dr. Ineka Whiteman’s research updates below.  

Ed Harriman is a proud Army Veteran and a very proud father of three children (Megan, Eddie, and Ryan) and grandfather to a new granddaughter (Elizabeth). His daughter, Megan, passed away from Batten disease in 2010. Ed lives in the Boston area and is very excited to join the Board.

A Massachusetts native, Ed is an attorney who currently specializes in Labor and Employment Law. He was awarded an Army R.O.T.C. Scholarship and graduated summa cum laude from Norwich University and the Boston University School of Law. His work experience began with the Army as a JAGC Lawyer, and he has worked at the Boston Housing Authority and in the nuclear, pharmaceutical, and utility Industries. He is also a former Special Assistant United States Attorney and Assistant District Attorney.

Ed is a huge Boston sports fan. His favorite team is the Boston Red Sox, but the New England Patriots are a close second. Ed played three sports in high school and played football in college after playing in a Massachusetts State All-Star Game. 

Chris Lowden, alongside his wife Danielle, has been connected to the BDSRA and Batten communities for nearly two decades. He previously served two terms on the Board from 2008 to 2014. Chris and Danielle are parents to two children with JNCL—Eric, who passed away in 2022 at age 27, and McKenna, age 24—as well as two unaffected daughters, Sophia, 19, and Tori, 16. They live in Wake Forest, North Carolina.

After years of focusing on caregiving, running a small business, and supporting their extended family, the Lowdens maintained their involvement primarily through annual donations. As their younger children have become more independent, Chris believed the time was right to rejoin the Board in 2026.

Chris holds a Ph.D. in Medicinal Chemistry from the University of North Carolina and has worked in medicinal and computational chemistry, cheminformatics, and research informatics. For the past 11 years, he and Danielle have operated Workflow Informatics Corp., a consulting firm serving biotechnology and pharmaceutical organizations. He hopes to contribute his experience in drug discovery, entrepreneurship, and advocacy—as well as his perspective as a longtime Batten parent—to support the BDSRA Foundation. Danielle brings deep expertise in caregiving, special education needs, and navigating government services, and they remain committed to serving the community as a team. Chris also lives within driving distance of Washington, D.C., and plans to participate in BDSRA advocacy efforts whenever possible.

After many years in the pharmaceutical industry, Mathias Schmidt has spent the past decade working with companies focused on lysosomal storage diseases, where he experienced how the hopes and dreams of affected families depend on continued therapeutic progress.

Guided by the principle that all human life has equal value, he is motivated by the belief that no child should be without hope and that families facing progressive, untreatable diseases deserve better options. Mathias is committed to helping advance meaningful change for the Batten community.

As the father of two healthy adult sons, he holds deep respect for the parents and caregivers of individuals with Batten disease, recognizing the love and compassion they bring to daily challenges. He also emphasizes that genetics is not a choice of lifestyle—and that some variants limit even the most modest hopes and dreams.

Mathias looks forward to contributing his experience and working collaboratively to make a positive difference.

Ned Timmerman is first and foremost a devoted father to his son Jack, who lives with CLN1 Batten disease. Through Jack’s journey, Ned has become a leading voice for Batten awareness and rare disease advocacy in South Carolina—helping to spark a movement of community support, legislative engagement, and shared hope known as Jack’s Pack. His efforts have amplified awareness statewide and inspired others to stand beside families facing unimaginable challenges with courage and love. 

Professionally, Ned brings more than a decade of experience in advocacy, public speaking, business development, and market strategy. His career spans both the business and health sectors, where he has worked to advance access, equity, and partnership—particularly in women’s health equality and organizational advocacy. Known for his ability to unite people and ideas, Ned creates opportunities where heart and strategy intersect to drive real-world impact.

Outside of his professional and advocacy work, Ned is a husband to Jaime and father to Jack and twins, Lylah Claire and Judah. He’s also a baseball umpire and lifelong live-music enthusiast.  

Fernanda (Fern) Leal-Pardinas, MD, MSc, became acquainted with the lives of children and families living with Batten disease when she worked as a Global Medical Director for the Brineura (enzyme replacement therapy for CLN2) program at Biomarin. She later became the clinical development lead for the CLN1 and CLN7 gene therapy programs at Taysha Gene Therapies and learned more about the differences between the different types of NCLs and the important unmet medical need for all of them.

Although she left Taysha, she desired to remain connected with the community that had left an indelible mark on her heart. Secondly, her willingness to contribute her professional and personal experiences to improve the lives of people living with Batten disease led her to join the BDSRA Board in 2023. It was a natural fit, and we are grateful for her time.

Fern served on the Science and Research Committee of the Board during the development of the Centers of Excellence program and the Batten Disease Global Research Initiative. These programmatic accomplishments were long-held goals, and we are grateful for Fern’s dedication in helping to create them. Fern finishes her term at the end of 2025.

Darlene Royalty was the Office Manager for Frericks Gardens, Inc., in Quincy, Illinois, with extensive bookkeeping skills when she joined the BDSRA Board in 2015. As a mother of three children with Batten Disease who had all passed away, Darlene brought a unique and passionate perspective to the board. She was dedicated to building up chapter support and working to increase membership. Little did she know the changes she would face ahead.

In 2016, Darlene was elected as secretary of the organization. During that term, a Strategic Planning committee would be formed, and the association would transition from a chapter-member organization to a self-appointed board and national organization. Soon after, the board searched for a new Executive Director as well.

Darlene became Chair of the BDSRA Board in January 2020. She and the Executive Committee immediately navigated through the challenges of COVID-19, the switch to a virtual Annual Family Conference, and another search for a new Executive Director. Together, they worked to put the Strategic Plan into action.

Under Darlene’s leadership, the Executive Committee met monthly, and new committees were created as needed. The Support Committee helped to plan the family conferences and virtual programming throughout the year. New staff and board members brought new ideas and a rebrand of the organization.

The Memorial Wall became a virtual “scrapbook” tribute to those lost to Batten disease, featured not only at the Annual Family Conference but on the website as well. The long-awaited Science Officer was hired, and the Centers of Excellence program was created. Research grants put on hold by COVID went back to work, and the new Batten Disease Global Research Initiative (BDGRI) was established and provided more than $260,000 to Batten researchers from around the world.

Darlene spent countless hours on the Annual Family Conferences, planned all board meetings, served and chaired several committees, and was a tremendous help to the staff. Although her time to serve on the board has come to an end, she has vowed to volunteer in any way she is needed and plans to remain involved in the Memorial program.

BDSRA Board and Staff are grateful for the service of Fern Leal-Pardinas and Darlene Royalty, and we hope to keep them close in the Batten community.

The House of Representatives passed the Give Kids a Chance Act (H.R. 1262) on December 1, 2025. Now, the Senate needs to follow suit. Learn more, and join the EveryLife Foundation for Rare Diseases in urging your Senator(s) to reauthorize this critical program.  

The BDSRA Foundation Family Register is a vital tool that enables us to keep you informed of ongoing Batten disease research, including future clinical research and natural history opportunities.

The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time. The form takes just a few minutes to complete and can be accessed by clicking the button below.

Together, we remember those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.

In this newsletter’s edition, we honor and remember:

Hannah Dolezal

To have your loved one’s name placed in The Illuminator and read at the Celebration of Life at the Annual Family Conference, please email patrick@bdsrafoundation.org.

Federal law sets 73 as the starting age for required minimum distributions (RMDs). Donors have until April 1 of the year after they turn 73 to take their first distribution. After that, the annual deadline is December 31.

2025 Annual Limits

• Individuals can donate up to $108,000 per year.
• Married Couples: Each spouse can donate up to the limit, allowing a total of $216,000.

New Reporting Requirements

• Form 1099-R: Starting in 2025, IRA custodians must use Code Y in Box 7 of Form 1099-R to identify QCDs. This change aims to simplify the reporting process and ensure accurate tax treatment.

Eligible Charitable Organizations

• QCDs must be made directly to qualified charities like the BDSRA Foundation. Contact your IRA custodian now to ensure that your QCD process is completed by year’s end.

Tax Implications

• QCDs are not tax-deductible, but the amount donated is excluded from taxable income, potentially lowering your tax burden. Always consult your tax advisor about eligibility.

These updates enhance the flexibility and benefits of using QCDs for charitable giving to BDSRA, especially for retirees managing their RMDs.

Please contact your IRA custodian to initiate your 2025 QCD process now.

If you have any questions or need additional information, please contact Amy Fenton Parker by emailing Amy@bdsrafoundation.org or calling 614-937-6011 today. 

Are you planning a birthday fundraiser for BDSRA this Giving Season? We are here to help!

BDSRA can make a custom link and QR code for you to create a birthday fundraiser that directly comes to us! Creating a Fam Fund is another great way to raise funds in celebration of your birthday, and we can do all the legwork for you. 

If you are interested in setting up a Fam Fund for a birthday fundraiser or a stand-alone birthday fundraiser this year, please contact Heather Dainiak at heather@BDSRAfoundation.org to get started.

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!

From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA Foundation receives for operations, the more money BDSRA can invest in programs, research, and advocacy.

That’s the power of FIVE. 

We connect your donation to Support, Research, and Advocacy for families of all CLN types.