September 2023 Newsletter

Dear NNPDF Community,

September has come to a close, children are back at school, and the leaves are beginning to turn in many parts of the country. This month we raised awareness of newborn screening and we continued discussing digital health technologies and the benefits they may have to the Niemann-Pick community, and our Family Services Manager, Laurie, connected with many families to assist with challenges faced or just for a catch up call and supportive resource.

The entire NNPDF team is eager with anticipation for October, one of our favorite months of the year! October is a special month for the Niemann-Pick disease community, as it marks Niemann-Pick Awareness Month – a time to come together, raise awareness, and celebrate the strength and resilience of those affected by the disease. This year, the National Niemann-Pick Disease Foundation (NNPDF) is focusing on a theme close to our hearts: families and the profound impact that Niemann-Pick has on each member of the family unit. From the person living with Niemann-Pick, to their siblings, parents, and extended family members, everyone is touched by the journey and strength required to navigate this complex condition.

We have a variety of ways to engage, to help raise awareness of Niemann-Pick Disease, and to connect with other Niemann-Pick families throughout the month. Each week throughout in October, we’ll have a special focus on our Super Siblings, diagnosed individuals, parents, caregivers, and extended family that you can share.

Highlights include:

• Custom-designed template to tell the world about your connection to Niemann-Pick
• Niemann-Pick Awareness badges to use on your social media profile to show your support
• NNPDF Community Connections Chats: Small group Zoom-based discussions for NPC or ASMD communities (October 3rd, 10th, 23rd, 24th)
• Coffee and Catch Up: Small group Zoom-based informal gatherings for all community members (October 4th, 11th, 18th, 25th)
• NNPDF Community Update Webinar series featuring The Assistance Fund (October 11th)
• NNDPF Community Update Webinar Series featuring a Book Talk with Amy Marcus on her book “We the Scientists”. A Pulitzer Prize–winning reporter’s moving narrative of a group of patient advocates forged a new path for medicine. (October 18th)
• NNPDF Store is open with all new t-shirts and designs in honor of Niemann-Pick Awareness Month, including designs specific to NPC and ASMD (you asked, we listened!)

Throughout October, we invite all members of this amazing community to join NNPDF in recognizing and celebrating the determination and bravery of patients, families, healthcare professionals and advocates. Visit our awareness month webpage to learn more about how you can be an advocate and get involved. This month, and every month, join us in raising awareness as we look forward to a future where all people impacted by all types of Niemann-Pick disease have access to life-changing treatments.

Sincerely,

Joslyn Crowe
NNPDF Executive Director