May 2026 Newsletter

A Message from the Executive Director

Dear Friends,

It is an honor to join National Niemann-Pick Disease Foundation as Executive Director, and I am incredibly excited for the journey ahead. Over these first few weeks, I have had the opportunity to connect with many members of this community, and I have been deeply touched by the warmth, openness, and dedication I’ve experienced in every conversation. It is clear that NNPDF is built on connection, compassion, and a shared commitment to supporting one another.

My connection to the rare disease community began early in my career as an early intervention specialist, working with children with autism and developmental delays connected to rare diseases. Supporting families during the earliest years of a child’s life gave me a deep appreciation for the strength, resilience, and advocacy that families carry every day.

That understanding became even more personal when my own son was diagnosed on the autism spectrum at just 15 months old. Our family quickly came to rely on a multidisciplinary team, from occupational and physical therapists to medical providers and educational supports, to help guide us through the challenges ahead. That team became our lifeline and made all the difference for our family over the years. Through that experience, I came to understand firsthand how critical connection, support, and community truly are. These experiences are why I have dedicated my life to the healthcare nonprofit space, because I know how profoundly it matters when families feel supported, understood, and never alone in their journey.

With our annual Family Support & Medical Conference now less than six weeks away, I am especially looking forward to meeting many of you in person. I have always believed that some of the most meaningful moments happen through personal connection, in conversations, shared experiences, and simply being together with people who understand the journey. We have an exciting conference planned, along with a few special surprises, and we cannot wait to welcome you there.

Thank you for the opportunity to serve this remarkable community. I am excited for what lies ahead. If you would like to learn more about my background, you can read my full bio.

Warm regards,

Heather Moran-Teal, M.Ed.
Executive Director

GROUP RATES END JUNE 8th

Accommodations

The NNPDF group rate will be available until June 8th for our 2026 conference. NNPDF Group Rate is $169 ($190.13 including taxes) per night. The NNPDF hotel group rate may be available three days before and three days after the conference, dependent on hotel availability.

REGISTER BY JUNE 8th TO RECEIVE YOUR CONFERENCE SHIRT

Conference Registration

Be sure to register by June 8th to get your 2026 Family Support & Medical Conference shirt! Final registration closes June 29th.

First Time Attendee? Enjoy a 10% discount off your registration! We’re happy to have you join us!

ORDER SWAG BY JUNE 9th FOR FREE CONFERENCE SHIPPING

Conference Attendees Special Store Offer

We are excited to share a special offer for conference attendees. Order your NNPDF gear by June 9th and get FREE SHIPPING when you pick up your merchandise at the Family Support & Medical Conference!

It’s easy!

Select your gear and place your order.
In Shipping Method select “PICK UP AT CONFERENCE for FREE”
Grab your gear at the conference!

PLEASE NOTE: NNPDF apparel and promotional items will only be available through the online store and not available for purchase at the family conference.

Family Support & Medical Conference Information

Who’s excited about the upcoming Family Support & Medical Conference? We’re looking forward to seeing everyone there as conference planning continues to come together!

Be sure to check out nnpdf.org/conf for information to help you plan your trip! You’ll find travel information, frequently asked questions, and things to do in the area.

Planning on exploring Orlando during your stay? Created exclusively for NNPDF conference attendees, Visit Orlando’s delegate website is your one-stop resource for planning and enjoying Orlando. The site includes exclusive discounts on attractions, dining, transportation, and more to help families save during their visit.

Theresia and Brendon Peterson

Parents of Henry, NPC

Tell us a bit about you and your family…

We are the Peterson family! Home is wherever Henry is❤️. We live just outside of Minot, ND. We were both born and raised in North Dakota but on opposite sides of the state. We spend a lot of our time outdoors: hunting, fishing, camping. You can catch us chasing around this spunky little boy or snuggling up after a long day of play. A fun fact is we have two very loving dogs, Charlie and Busch.

Sharing Your Family’s Diagnosis Journey

Our path to diagnosis might look a little different. My husband and I spent a few years undergoing fertility treatments. Once our prayers were answered, my OBGYN mentioned carrier screening due to the fact I was adopted at a young age and didn’t know much about my family medical history. We completed carrier screening and were told that our child had a 75% chance of carrying NPC and a 25% chance of being affected by NPC. We did an amniocentesis at 20 weeks pregnant to find the answer. Henry fell in the 25% and was diagnosed with NPC before birth. Henry was retested at birth as well… CONTINUE READING

NNPDF In Action

University of Wisconsin-Whitewater Partnership

The National Niemann-Pick Disease Foundation partnered with students from the University of Wisconsin-Whitewater (UWW) for their PR Campaigns course final project, focused on increasing awareness of Niemann-Pick disease and developing educational campaigns for the community.

Jill Beirl, NNPDF Communications & Marketing Coordinator, met with students to share information about Niemann-Pick disease, the Foundation’s programs, community, and its history to help students better understand the organization’s mission and needs. Throughout the project, students showed tremendous dedication, creativity, and a genuine commitment to learning about the rare disease community as they developed tailored campaign ideas, educational materials, and sample PR messaging.

The semester concluded with final presentations attended by NNPDF staff and board members, who provided feedback and answered questions. NNPDF is incredibly grateful to the students and faculty at UWW for their hard work, professionalism, and meaningful partnership.

Moments & Milestones

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 life event 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!

Caden recently played in his first Dream Catchers baseball game of the season and had an amazing time! This year’s special needs baseball program welcomed 47 participants, and the excitement continues to grow each season with bigger crowds, more fans, and unforgettable moments for the kids. We’re incredibly grateful to Stacy, the running buddies, volunteers, cheerleaders, and fans who make these games so special and fill the hearts of these athletes with joy.

Way to go Caden!

Leslie and family had the opportunity to trade the cold weather in Ohio for the warm sunshine of the Florida Keys! Leslie was diagnosed with Niemann-Pick Type C in 2025 and over the last 18 months, her life has changed dramatically. She went from being independent and working full time to now relying on a wheelchair for mobility. Despite these circumstances, Leslie remains positive and was grateful to be able to enjoy some much-needed relaxation and quality time with those she loves most!

Here’s to sunshine, smiles, and special memories!

The Parker Lee Project

The Parker Lee Project was founded in 2013 in honor of Parker Lee Reynolds, who was born with complex medical needs that required extensive equipment, care, and support. Through their family’s experience navigating medical providers, insurance companies, and overwhelming challenges, the organization was created to help other families facing similar situations. For over 12 years, The Parker Lee Project has provided medical equipment, supplies, and support to thousands of children and families in need, continuing to make a lasting impact in their lives. Learn more.

Thank you to James Bailey for sharing this incredible resource! If you have a helpful tip, 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.

NORD’s ASMD Patient Assistance Programs

NORD has offered assistance programs since 1987 to help patients access critical, life-sustaining medications and other support that might otherwise be out of reach. For individuals in the ASMD community, NORD’s Patient Assistance Programs may also help cover insurance premiums, co-pays, diagnostic testing, and even travel related to clinical trials or specialized care. Learn more.

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.

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!

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]