February 2026 Newsletter
Message to Our Community | Rare Disease Day | Community Voices Spotlight | Community Connections Chats | INPDR Update | YARR Leadership Academy | Care Clips & Tips | Family Assistance & Support Program | Fundraising | ASMD and NPC Care Clinics | Plain Language Summaries | Milestones | NNPDF Gear and Awareness Apparel | NNPDF Membership
A Message to Our Community
Dear Friends,
As we look ahead to spring, we are filled with renewed energy and optimism for the months to come. At NNPDF, our focus remains firmly on the future and on strengthening the support we provide to our entire Niemann-Pick disease community.
We are also investing in the future leadership of our organization. NNPDF is currently accepting applications for the Executive Director and Family Services Manager positions. These roles are vital to expanding our reach, strengthening family support services, and advancing our mission. We look forward to welcoming passionate leaders who will help guide NNPDF into its next chapter.
Thank you to everyone who joined our Community Connections Chats this month! Your participation, openness, and shared experiences are what make these conversations so meaningful. Topic suggestions are always welcome and encouraged for future chats! Your voice helps shape these discussions and ensures they remain valuable to our community.
As we continue building toward the future, our Niemann-Pick Toolkit remains a central priority. This important initiative is progressing steadily and will provide much-needed support through the development of a comprehensive Niemann-Pick Disease Toolkit. Designed to offer clearer direction, practical resources, and guidance, this toolkit will help families feel more informed and supported throughout their journey.
Respectfully,
The NNPDF Team
Rare Disease Day is February 28th!
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Rare Disease Day promotes raising awareness and generating change for the 300 million people worldwide living with a rare disease such as Niemann-Pick, their families and caregivers. YOU can show your support on Rare Disease Day by raising awareness of Niemann-Pick Disease and what it means to be rare. Learn more and get involved!
Kasey Apt
Mom of Tinley, ASMD
Tell us a bit about you and your family…
Hi everyone! I am Kasey Apt and my daughter Tinley (ASMD) is 10 years old. Our family lives in a little town called Montpelier, Ohio… out in the middle of nowhere. We love going to the lake together as a family, going to hockey games, and serving in our church together. My husband, Thane, and I have three children: Tinley and her siblings, Addaley is 8 and Brentley who is almost 12. We also have a furry pup named Chett, who is Tinley’s very best friend.
Sharing Your Family’s Diagnosis Journey
When Tinley was about 3 years old, she had an enlarged belly, and my mama heart knew something wasn’t right. So, I asked her family doctor run a few simple tests to check for celiac disease or similar conditions, especially since her cousin had just been recently diagnosed with celiac. It didn’t come back positive for that, but the doctor could definitely tell something was still wrong… READ MORE
Continuing the Conversation
We are so grateful to everyone who participated in our Community Connections Chats this month! We especially want to thank our hosts, including community members, NNPDF Board members, and Scientific Advisory Board members, for sharing their time, insights, and expertise while leading such engaging conversations. These chats provide a positive and supportive space to connect, collaborate, share experiences, and ask questions. The camaraderie and thoughtful dialogue continue to strengthen and uplift our community.
We welcome and encourage your ideas and suggestions for future topics and special guests. Your participation and engagement help shape these conversations and ensure they remain meaningful and relevant for all. We look forward to gathering again soon and continuing these meaningful conversations together.
International Niemann-Pick Disease Registry
The INPDR is pleased to share the newly published Forum Report, which brings together key insights, priorities, and shared experiences from across the global Niemann‑Pick community. Over the past year, the Registry has strengthened its international research network through new clinical site partnerships and expanded global participation. The launch of the NP GUID further enhances secure, ethical collaboration by enabling consistent pseudonymised identifiers across studies, supporting researchers worldwide in advancing Niemann‑Pick… READ MORE
YARR Leadership Academy
The Young Adult Rare Representatives (YARR) Leadership Academy is now accepting applications for its Spring 2026 cohort, a six-week online program teaching young adults (ages 18–30) about federal advocacy, patient representation, and leadership in the rare disease space. Students will hear from expert speakers, including patient advocates, policymakers, and past Academy graduates, and learn how to have a meaningful impact on public policy. Classes run Thursdays from April 23 to June 4, and attendance at all six sessions is required to graduate. Applications are open through March 10. Learn more and apply.
Team Impact – Get Your Child In The Game
Team IMPACT is a national nonprofit that matches children facing serious illnesses and disabilities with college sports teams, creating a long-term, life-changing experience for everyone involved. By becoming an official member of a team, children gain a sense of belonging and empowerment, while student-athletes develop deep empathy and leadership skills through these unique mentorships. You can learn more about their incredible clinical model and how to get involved by visiting their website at teamimpact.org.
Special thanks to Dawn S. for sharing this helpful tip. If you have a resource or insight you’d like to share, we’d love to hear from you! Please send it to [email protected].
Family Assistance & Support Program
The NNPDF Family Assistance & Support Program (FASP) provides relief to NNPDF U.S. member families that may be facing a financial obstacle that requires short-term financial assistance. Funding includes but is not limited to, specialized medical equipment and goods, utility bills, adaptive home repairs, home and car repairs, car payments, rent and mortgage payments, and bereavement expenses. Learn more about the NNPDF Family Assistance & Support Program.
Please call 877-287-3672 or email [email protected] if you have any questions about this program.
Fundraising
Contributions through fundraising by NNPDF members, families and friends are used to provide services and information to individuals and families affected by Niemann-Pick disease. Please continue to host and support Niemann-Pick fundraisers. Awareness Events promote awareness to the general public about Niemann-Pick Disease.
THANK YOU to Lynn Ell and Tauni Daub, who recently held a fundraiser to help support NNPDF’s mission!
If you have recently hosted a fundraising event, send us your photos and we’ll share them and details from your event in upcoming newsletters! Want to host your own fundraiser? Facebook Fundraisers are an easy option! Visit facebook.com/fund/NNPDF to get started!
ASMD and NPC Care Clinics
NNPDF has created a listing (formerly Comprehensive Care Centers) of U.S. academic and private practice clinics with experience in caring for and treating ASMD and NPC. We are pleased to offer this valuable resource to our patients and families as they search for diagnosis, medical care, and treatment.
Interested in joining our Care Clinics listing? The information in this listing is submitted directly by the medical providers. To have your clinic included, or if you are connected with a medical team that would like to be added, please visit our Care Clinics page for application information.
Plain Language Summaries
NNPDF is pleased to offer Plain Language Summaries to help our community stay informed about the latest medical research. These summaries translate complex scientific findings and clinical trial results into clear, accessible language, empowering patients and families to better understand advancements in Niemann-Pick care and treatment. This resource is designed to support more informed discussions with your healthcare team and help you make the best decisions for your family. Visit our Plain Language Summaries page to explore the latest updates.
Milestones
The NNPDF loves to showcase the special moments, memories, and meaningful steps you’ve been a part of along the way. If you have a special milestone to share with our Niemann-Pick community, send a photo along with the details to [email protected] and we’ll publish it in future communications!
Get Your NNPDF Gear and Awareness Apparel for Rare Disease Day
Now is a great time to get your Niemann-Pick Awareness apparel, NNPDF Logo apparel and NNPDF logo products shipped directly to your door! Order today and support your Niemann-Pick community! Store ships to U.S. residents only.
NIEMANN-PICK AWARENESS APPAREL is available! Raise awareness for ASMD or NPC, and even personalize for your family. Awareness shirts are available in 3 designs with ASMD, NPC, or Niemann-Pick Disease options available. Send us your photos with your new gear!
NNPDF Membership
Enrolling, confirming, or updating your membership will ensure we have accurate information for you and your family. This will help us to continue to provide you with important notifications and updates from the NNPDF.
Click here to update or enroll today!
For assistance contact us at [email protected]
With gratitude to our Funding Partners
We are grateful to these companies for their trust and support in advancing our mission.
