November 2024 Newsletter

A Message to the Community

As we conclude November, a month dedicated to gratitude, we extend our heartfelt thanks to all our NNPDF families and members. Your unwavering dedication to raising awareness and supporting our community is truly remarkable. By working together, we continue to strengthen the network that promotes growth and hope in ASMD and NPC. Let’s celebrate the positive impact we are making together!

As we celebrate this season of gratitude, we also want to highlight the incredible milestones that have touched your families recently. Please consider submitting milestone moments and family photos so we can showcase the special moments you have been a part of, please email family photos and milestones to [email protected].

Be assured that NNPDF is available to support your family during their journey with ASMD and NPC. We can provide objective information on available treatments, help find local resources, and provide access to medical specialists or some days, just be the voice on the other end of the phone. We are here to help you – please let us know how we can best support your family.

Thank you for sharing your family with us,

Liz Heinze, Board Chair
[email protected]

Laurie Turner, Family Services Manager
[email protected]

Now Available: Soaring Together

NNPDF is excited to share Soaring Together, written by Jillian Arnold. This book is inspired by the beautiful and unique journey the Arnold family has been on with their two brave kids, Roman and Stella, who are battling ASMD Type A/B.

Soaring Together: A Butterfly Family’s Story of Discovery, Love, and Resilience follows Roman and Stella, two butterfly siblings eager to explore the world. When they emerge from their chrysalises, they find themselves unable to fly. Disheartened, their parents lovingly reassured them that their differences don’t limit their ability to experience life’s wonders.

Congratulations to Jillian! Thank you for sharing your journey with us and spreading awareness for the rare disease community. Soaring Together is available on Amazon.

Be sure to check out our Family Resources webpage where you’ll find other Books & Publications dedicated to members of our Niemann-Pick community who have expressed themselves in books or other publications.

International Niemann-Pick Disease Registry

Justin Hopkin shares the importance of the International Niemann-Pick Disease Registry in this video. The registry serves as an essential resource designed to assist researchers, healthcare professionals, and everyone impacted by Niemann-Pick diseases. Each individual voice and story contributes to the power of this initiative and is particularly important as there is a real need for disease-specific information to support diagnosis, improve clinical care, and advance research.

If you have not yet registered or updated your information with the International Niemann-Pick Disease Registry we encourage you to do so. Visit inpdr.org to learn how you can join.

Celebrating #GivingTuesday

On Tuesday, December 3rd, the National Niemann-Pick Disease Foundation will take part in #GivingTuesday, a day recognized across the nation for its spirit of giving. Your contribution can make a significant impact on families affected by Niemann-Pick Disease by enhancing the essential program services that NNPDF provides to our community. Please consider a gift on #GivingTuesday.

Supporting One Another. Supporting Our Community.

Milestones

Do you have a special milestone to share with our Niemann-Pick Community? Please consider submitting milestone moments and family photos so we can showcase the special moments you have been a part of.

Send a photo along with the details to [email protected] and we’ll publish it in future communications!!

The Assistance Fund

2025 reenrollment is now open. If you are you currently receiving financial assistance through The Assistance Fund’s ASMD financial assistance program, please be aware of key dates and TAF’s reenrollment process so you are prepared to submit a reenrollment application for 2025 TAF assistance. Find complete details.

NNPDF Store - Order Now for the Holidays!

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 NPD, as well as supporting research into finding treatments. Please continue to host and support NPD fundraisers. Awareness Events promote awareness to the general public about Niemann-Pick Disease.

THANK YOU to Janet Jacobs and Patricia McClees who recently held a fundraiser to help support NNPDF’s mission!

If you’ve 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!

Surveys, Studies, & Market Research

Be sure to check out our Surveys & Market Research webpage for current survey and study opportunities in the Niemann-Pick disease space. Participating in surveys and studies is important to the advancement of health options for our Niemann-Pick community members. Contact Laurie Turner at [email protected] for any questions.

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 contact Laurie Turner, Family Services Manager at 920-542-4038 or [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. Learn more!

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

ASMD Accelerate

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.

Update or enroll today!

For assistance contact Laurie at [email protected] or call 920-542-4038.