October 2025 Newsletter

A Message from our Board Chair

Dear Friends,

The fall season brings change, but one thing that remains constant is the strength and warmth of our NNPDF community. As we wrap up October Awareness Month, I want to thank you for helping us raise awareness by sharing our communications, joining our Community Chats, and supporting one another. Your engagement truly makes a difference. We also welcome your ideas for future chat topics that matter most to you and your families.

The Board of Directors continues to guide the organization through this time of transition, focused on keeping our programs steady and our families supported. We will be welcoming an interim Operations Manager to provide leadership while we thoughtfully search for our next Executive Director. Hiring a Family Services Manager also remains a top priority as we respond to the evolving needs of our community.

We hope your family will join us for the Regional Family Event on November 8 in Richmond, VA. Registration closes October 30. It will be a wonderful day to gather, learn, connect, and share with others in your local Niemann-Pick community. Come meet other families, hear updates, and enjoy a day of support and connection.

Looking ahead, we are also excited to share our annual Bringing Holiday Cheer Program, started by an anonymous donor who wanted to make the holidays a little brighter for Niemann-Pick families. This program helps bring a sense of togetherness and joy during the busy season, and we are so grateful to everyone who continues to make it possible.

We’re happy to share that the photos from our 2025 conference are now complete, and all event photos and recordings are available on our Family Support & Medical Conference page. Thank you again to the over 200 family members, friends, and colleagues who attended and contributed to such a meaningful event. Remember to save the date for next year’s conference from July 9 to 11 in Orlando, FL.

Thank you for your continued trust, care, and partnership. Together, we will keep moving forward with hope and heart for every family we serve.

Warmly,

Liz Heinze, RN
NNPDF Board Chair

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

November 8 | Richmond, VA

Registration Deadline is October 30th

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.

Bringing Holiday Cheer

NNPDF is excited to share that the Bringing Holiday Cheer program is now underway! In its 6th year, this program was founded by an anonymous donor and continues to brighten the holidays for our Niemann-Pick families, helping make the season a little brighter and creating special memories together. Thank you to everyone who helps make this tradition possible!

All NNPDF members residing in the U.S. are eligible to apply for the Bringing Holiday Cheer Program. Whether you are finding joy in the season, navigating the challenges of Niemann-Pick, or remembering a loved one, you are part of this community and are always remembered.

Application deadline is Friday, November 15th

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.

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.

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!

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 Eric Shawn Peterson and Justin Smitty 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!

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