We need your help to find treatments and ultimately a cure for CoPAN.
CoPAN is one of 10 known ultra-rare Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. Conquer CoPAN! is a campaign to raise research funds in the battle against COASY Protein-Associated Neurodegeneration (CoPAN), caused by a mutation in the COASY gene. It is exceedingly rare with fewer than 25 known cases.
At present, it appears that onset usually occurs in childhood and spasticity and dystonia of the lower limbs are present early on, while dystonia of the mouth and jaw appear later in the disease process. The dystonia can be debilitating. Speech problems are also seen, including stuttering and a slurring of words, caused by dysarthria. As of now, there is only treatment to help manage some of the symptoms - there is no cure.
Research funding is desperately needed to help speed up finding a cure.
Here’s how you can help:
Help bring awareness to CoPAN so we can fund potentially life-saving research. You can make a donation, knowing that every dollar makes a difference. Just click on the lavender button below. You could also share about 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 CoPAN 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, Instagram 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 ultimately a cure for CoPAN.
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.
The common feature among all individuals with NBIA is iron accumulation in the brain,
along with a progressive movement disorder.
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.