Aadi works hard to stay strong. He and his family are grateful for support to help find a cure.
Brent stays as active as possible, and makes gelato to share and raise funds.
We need your help to find treatments and cures for PKAN.
PKAN is one of 10 known ultra-rare Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. Beat PKAN is a campaign to raise research funds in the battle again Pantothenate Kinase-Associated Neurodegeneration, caused by mutations in the PANK2 gene. While exceedingly rare, it is the most common form of NBIA. The discovery of this gene and its mutation was made in 2001. The gene provides the instruction for making the enzyme pantothenate kinase. Mutations result in damaged nerve cells in the brain.
PKAN causes severe problems with walking, coordination, vision, speech, swallowing, and uncontrollable twisting movements which can be extreme, causing pain and even bone fractures. Cognitive awareness is not affected, making the suffering imposed by the disease especially poignant. Many children with PKAN die before the age of 10.
Onset usually occurs in childhood featuring leg weakness, spasticity, and falling, as well as vision challenges. Later, affected individuals generally get worse, and lose the ability to move or walk independently 10-15 years after symptoms begin.Dystonia, a movement disorder that causes the muscles to contract and spasm involuntarily, is always present and can lead to bone fractures. Problems pronouncing words and swallowing often develop, along with a loss of brain cells and tissue in the cerebellar area of the brain. As the person ages, it is common for wheelchair use to be needed by their mid-teens, and life expectancy varies. As of now, there is only treatment for some of the symptoms, and there are no cures.
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 PKAN so we can fund potentially life-saving research. Several trials are underway right now. You can make a donation, knowing that every dollar makes a difference. Just click on the purple Click here to Donate Now button below. You could share your donation with your friends and family to encourage them to also donate.
If you like, create a personal fundraising page by clicking on the blue Raise money for PKAN 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.
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 here.
We hope you will consider joining 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. EIN 33-0712327.
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.