Resources
Do you have a child who is newly diagnosed with Niemann-Pick Disease, Type A? We are incredibly sorry to welcome you into our community, but you won’t find a more supportive one anywhere else.
Connecting
National Niemann-Pick Disease Foundation (NNPDF) Awareness Group (Facebook). Though the NNPDF is largely focused on Type C, their Facebook group is extremely useful in connecting families of all types of Niemann-Pick Disease.
Family Blogs
Some of the best information we received is courtesy of other families who are going or have gone down our road.
Linzer, Party of Five: the full story of Quinn Madeleine Linzer. www.teamlinzer.com
Our Sonny Life: the story of Trek Atlas Ingram. www.oursonnylife.com
Wylder Nation: the story of Wylder James Laffoon. www.wylderjames.com
Kaitlyn’s Korner: the story of Kaitlyn Kay Bourgeault. niemannpick.blogspot.com
The Joy of Jacob: the story of Jacob Brooks. joyofjacob.blogspot.com
Hanna Emilia’s bunter Garten: the story of Hanna Emilia Thierfelder (in German). hannaemiliasbuntergarten.blogspot.de
Medical Information
Niemann-Pick Disease Center at Mt Sinai Medical Center. Though there is very little research done on the disease, there is a natural history study on-going at Mt. Sinai Medical Center in New York City. You do not need to live nearby to contact them. Dr. Melissa Wasserstein, who heads up the NPD Center, has the most experience with Lysosomal Storage Disorders in general, and NPD specifically, and is an excellent resource.
National Tay-Sachs and Allied Diseases. Both Lysosomal Storage Disorders, NPA and Tay-Sachs are allied diseases. Much of the information and resources available through the NTSAD are beneficial to any family dealing with NPA.
Palliative and Hospice Care. Palliative care and hospice care are critical for children with NPA. And now more accessible than ever, thanks to the Pediatric Concurrent Care mandate under the Affordable Health Care Act. Children can simultaneously undergo curative and palliative care treatment and cannot be denied coverage by insurance companies (they were previously mutually exclusive).
You may need to fight for the consult but the earlier you start the process, the better.
In Metropolitan New York:
MJHS Hospice Care. Phenomenal pediatric care – and whole family care - team, both palliative and hospice.
Therapeutic Information
Therapies. Utilize your state’s services! Your child can receive Physical Therapy, Feeding Therapy, Speech Therapy and Occupational Therapy and the state or school district should be picking up the tab. Contact your children’s hospital’s social worker or your pediatrician for information on where to start.
In New York State:
Early Intervention Services. Through the state from birth to three years of age. At age three, care moves under your local school district.
Soft Touch Sitter. This chair is a miracle for our NPA babies. They gain independence and it fits in / on / strapped to everywhere and everything! Your state agency or insurance may cover the cost, or part of the cost – make sure to check with your child’s health care provider and care coordinators.
