September 2025 Newsletter

Your Voice Matters During Niemann-Pick Awareness Month

There is strength in community, and there is power in our voices. When we come together – families, friends, advocates, and allies – we shine a light on Niemann-Pick Disease. Awareness isn’t just about information, it’s about action, empathy, and standing in solidarity with every person and family impacted by this disease.

Each story shared, each conversation started, each life touched are the moments that build momentum. Our unity speaks louder than words and it’s something we build together, one voice at a time.

Show your support for the Niemann-Pick community by helping to raise awareness and educate others. Whether you’re sharing a post, telling your story, or simply listening and learning, you are part of a movement and reason someone learns about Niemann-Pick Disease for the first time, and the reason they choose to care.

During Niemann-Pick Awareness Month and beyond, let’s continue to raise our voices, uplift our community, and remind every family facing Niemann-Pick that they are not alone.

Supporting One Another. Supporting Our Community.

NNPDF Family Event: You're Invited to Richmond, VA!

November 8 | Richmond, VA

We’re excited to welcome you to the NNPDF Family Event on Saturday, November 8. This special day brings together Niemann-Pick families from the greater Richmond area to connect and support one another.

Spend the day sharing experiences, learning, and enjoying meaningful time with others in your community. We look forward to seeing you and celebrating together!
This is a free event for NNPDF immediate family members and lunch will be provided.
Pre-registration is required for all attendees by October 30th.

Community Connections During Awareness Month!

We’re excited to offer several virtual opportunities for NNPDF families to come together, connect, and support one another throughout the month. Whether you’re looking to catch up, learn, share, or simply take a meaningful break, we invite you to join us in strengthening our community bonds. Stay tuned for event dates and details coming soon!

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!

Surveys, Studies & Market Research

NPC Brain Imaging Research Study for NPC

Dr. Jaymin Upadhyay and his team at Boston Children’s Hospital are leading a research study to better understand NPC through advanced brain imaging and non-invasive assessments. The study includes questionnaires, cognitive and motor tasks, a blood sample, and non-invasive brain and muscle assessments. Visits take place over two days at Boston Children’s or McLean Hospital, with home visit options and travel support available. Participants will be compensated for their time. Learn more about this study.

NNPDF Gear and Awareness Apparel

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!

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 Sara Christophel 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!

Be Part of the Story: Submit Your Photos!

We’d love to feature the incredible strength and spirit of our community by including your photos in our communications and promotions throughout the year! Whether it’s a family photo or a picture of your Niemann-Pick warrior, your photo helps tell our story. By sharing them, you’ll help us spread awareness, build support, and highlight the power of our amazing community. Please send your favorite photos today to [email protected]!

Thank you for supporting our NNPDF community. We truly appreciate and THANK each and every one of you for all you do.

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.

Comprehensive Care Centers

NNPDF provides a listing of medical institutions that have experience in caring for and treating Niemann-Pick disorders. This project is supported by our Scientific Advisory Board and we are proud to offer this valuable resource to our families as they search for medical care and treatment. This information has been provided to us by the institutions. Click here to learn more!

If you are connected with a medical team that would like to be added to the NNPDF Comprehensive Care Centers listing, please email [email protected].

ASMD Accelerate

The Assistance Fund

Struggling with out-of-pocket expenses due to acid sphingomyelinase deficiency (ASMD)? The Assistance Fund is an independent charitable patient assistance organization helping patients and families by providing financial assistance for the cost of treatment and other health-related services. Through its Acid Sphingomyelinase Deficiency Financial Assistance Program, eligible individuals can receive assistance for all FDA-approved treatment for ASMD. Learn more.

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 Laurie at [email protected] or call 920-542-4038