April 2017 Newsletter
Dear NNPDF families,
This year has started off full of mixed emotions for our NPD community. While our hearts are encouraged by now having four FDA approved trial options, they are also broken by having to say goodbye to several of our NPD warriors along with learning of newly diagnosed families just entering the NPD battle that we are so passionate about.
Dillon Papier was one of those precious warriors that we had to say goodbye to this month. Dillon touched the lives of so many of us as he courageously fought not only NPC, but also liver cancer. He and his family did this with tenacity and grace that has inspired all of us. In the last decade the Papier family has raised over a million dollars to support research and the services that are provided through NNPDF. With broken hearts they continued to do this even this past weekend as they followed through on a planned fundraiser in honor of Dillon.
They are not alone in their relentless pursuit of a cure and commitment to providing a patient group that supports all families, through all stages of this disease. In February we informed you that in April we would be meeting face to face with leading NPC community members, as well as a teleconference with ASMD families.
We are pleased to announce that we had a very productive meeting on April 2 with a group of NPC members, some whom have been leaders in the community. This meeting was made possible by a grant from Ara Parseghian Medical Research Foundation, which assisted with the NPC meeting expenses. We also thank each guest who generously gave of their time and provided their own expenses to meet face to face and discuss rebuilding the NNPDF organization and community.
We will have our ASMD Teleconference this Thursday. All ASMD foundation family members should have received information about this meeting. We have no doubt this meeting will be met with the same determination that we found in our NPC meeting to reinvent, rebuild and rebrand the NNPDF as a beacon of light and hope for all NPD families navigating the many emotions that come with this diagnosis.
As we also shared in February we plan to update you at the end of this month with conference details. The NNPDF genuinely appreciates the patience you have given us while we work with the community to find a positive path forward for everyone that will lead to a strong patient group. One that is led by you and welcomes those who are broken, those who are fearless, and those who are fighting to find us a CURE!
Blessings to you and your families,
The International Niemann-Pick Disease Registry project is a collaboration between scientists, clinicians and patient associations consisting of 11 associate partners and 16 collaborative partners across the globe, covering a vast range of expertise in the field of Niemann-Pick Diseases.
Currently, multiple registries may exists to capture data for one disease group. This causes a duplication of data between registries, and results in significant time, effort and costs being spent to complete this work. The INPDR aims to create a single registry capturing data for Niemann-Pick Diseases types A, B and C.
For complete details click the INPDR link.
Family Voices is a national, nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Working with family leaders and professional partners at the local, state, regional, and national levels since 1992, Family Voices has brought a respected family perspective to improving health care programs and policies and ensuring that health care systems include, listen to, and honor the voices of families.
Family Voices provides families with resources and support to make informed decisions, advocate for improved public and private policies, build partnerships among families and professionals, and serve as a trusted resource on health care.
To find resources in your area, go to the Family Voices website and enter your state.
The NNPDF equipment exchange program was created to help others in need. We are happy to report that the Invacare Wheelchair has found a new home. The NNPDF assists families who wish to donate equipment that is no longer in use to help others in need. Our goal is to ensure that all NPD families have access to equipment that they need to assist their loved ones affected by Niemann-Pick Disease.
Click the special equipment button for updates on equipment availability.
Contributions through fundraising by NNPDF members, families and friends are used to support research toward finding treatments and a cure for NPD. Funds also support the National Niemann-Pick Disease Foundation which provides services to individuals and families affected by Niemann-Pick Disease. Please continue to support the following current and upcoming fundraisers.
Awareness events promote awareness to the general public about Niemann-Pick Disease.
Donating to the NNPDF has just gotten easier. You can now donate online through PayPal using your debit or credit card. Using PayPal is easy and having an account is not required. Click the button to donate now!
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