We need your help to find treatments and cures for PLAN/INAD.
PLAN is an exceedingly rare genetic neurological disorder causing significant challenges for those affected. It is diagnosed via DNA testing of the PLA2G6-Associated Neurodegeneration gene. PLAN is one of 10 known Neurodegeneration with Brain Iron Accumulation (NBIA) disorders, and a variant is Infantile Neuroaxonal Dystrophy (INAD).
Classic INAD starts early in life and progresses rapidly. It usually develops between 6 months and 3 years of age. The first signs are often delays in developing skills, such as walking and talking. Eye disease is common later on and can cause poor vision and eventual blindness. Seizures and fast rhythms on an EEG may also occur.
A loss of cognitive abilities occurs, and many affected children never learn to walk or lose the ability early on. Many affected children do not survive beyond their first decade, but some survive into their teens or later.
Research funding is desperately needed to help speed up finding a cure.
Here’s what you can do to help us:
Help bring awareness to PLAN/INAD so we can fund potentially life-saving research. It’s easy. Just create a personal fundraising page by clicking on the blue Fundraise button below. Share your story and say why this is important to you and your family. Add some photos too. Set your own fundraising goal, whether it is $40, $400 or $4,000. Choose any amount and just know: Every dollar makes a difference!
And don’t forget to promote your page on Facebook and Twitter.
Don’t want to set up a page? How about hosting a picnic or another event to raise funds?
Only have time to send an email or two to family and friends? No problem. Tell them you need their help. Ask them to share your message with their friends and family or create their own page to raise awareness. Or they can donate directly by clicking PLAN/INAD (Private).
HERE’S HOW YOU CAN HELP. We’re asking you to please consider joining with others to fund research for treatments and cures.
Please know that your contributions are tax-deductible to the full extent allowed by law because we are a charitable, 501(c)(3) organization.
Neurodegeneration with Brain Iron Accumulation is a group of rare, genetic neurological disorders characterized by abnormal accumulation of iron in the basal ganglia. The basal ganglia is a collection of structures deep within the base of the brain that assist in regulating movements.
In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world.
Federal Tax ID EIN 33-0712327