Hello and welcome to our 2020 Big Wow Fundraiser page! Please read our story (further below) about how Wilson's Disease (WD) has greatly impacted our lives over the last 10 years. Unfortunately, due to COVID-19, the Wilson's Disease Association has gone fully virtual for the event this year, but with your support, we can make it the best one ever!
Please click the donate button (to the right) to donate and support the fight against Wilson's Disease. All funding will go towards the WD Patient Registry. "The Patient Registry creates a framework for advances in diagnosis, treatment and potential cures for the disease. Not only will the current generation of Wilson's Disease patients benefit , but this registry will serve as a roadmap for future generations to come." Please visit www.wilsonsdisease.org for more information. Please note that we will be accepting donations throughout the month of October. The donations link will be deactivated at 11:59p.m. on 10/31/2020.
Alex was a typical 20 year old in late 2009 when he began having neurological issues, neccesitating him to drop out of college because of severe fatigue, abnormal gait, difficulty swallowing and abnormal speech. After a visit to our family doctor in spring of 2010 and emergency neurology appointments and tests, he was diagnosed with Wilson's in August 2010 at Duke University Hospital. As they say, hindsight is 2020, we all realized those seemingly random symtpoms were typical of Wilson's. After agressive treatment with a chelating medication to remove copper from the liver, the "free" or non-protein bound copper damaged Alex's brain rendering him incapable of performing all activities of daily living without full assistance.
He has regained *some* abilities after maintenance treatments and physical and occupational therapies, but our goal for this fundraining event is to raise money for the Patient Registry that will enable us to determine best practices for diagnosis and treatment and support new initiatives for research and patient care.
Now, Alex is a happy 31 year old, but totally dependent for his care. He has a feeding tube for his main nutrition but can eat a bit of food and drink when fed by a caretaker. He needs someone to shower/bathe him, dress him, get him up and put him to bed and although he is unable to speak, he communicates with a sign board and many facial expressions!
Our hope is to raise awareness for WD, so that we can prevent future generations from the same devastating situation. Early diagnosis and treatment is the key! Thank you for supporting us and the WD community as we work together to better the lives of our fellow human beings!! Stay safe out there.
All donations are used to fund the Patient Registry Research Project for Wilson Disease. The Wilson Disease Association is a 501 c (c) organization in the United States.
|Karen Mandarano||10/17/2020||$100.00||Marianne: We are with you and Alex in your quest for earlier diagnosis and treatment. Wishing the best for both of you.-Karen||Nicole McKay||10/13/2020||$50.00||Stay strong, Alex. We are with you. My daughter was diagnosed with WD 6 years ago.||Marianne Tysinger Collins||10/07/2020||$200.00|