Hope for Adam
Donation protected
Adam Wohlstattar has been a childhood educator for 15 years in the northern Los Angeles area (specifically Ventura County); the last 6 years as Assistant Principal for a middle school in Simi Valley. As a vibrant, successful 38 year-old who is married to a wonderful woman, Brinden (also an educator), and father to Greyson, an amazing 3 1/2 year old boy, Adam appears to have it all.
But on June 10th, 2014, his world changed when he was diagnosed with an extremely rare, genetic neurodegenerative disease that currently has a fatal life expectancy of 6-10 years upon diagnosis: Prion Disease.
"Prion Disease?" you may ask...Exactly. Most of us have never even heard the term "prion." Our mission in this campaign is twofold: First and foremost, to help support Adam and Brinden with their medical expenses and travel costs to see research and medical specialists at University of California San Francisco Memory & Aging Center (UCSF), while simultaneously raising money and awareness of this disease that is grossly underfunded and relatively unknown, despite its devastating effects.
Just four months after his official diagnosis, Adam had to step down from his administrative education career and is currently on medical leave for the remainder of the school year, so he may focus on staying well and spending as much time as possible with his family. Saying goodbye to his staff and students was one of the hardest things he's ever had to do, but maintaining his health and spending as much time as he can with Greyson and Brinden are his highest priorities.
So what exactly is Prion Disease? A link to a website offering more scientific definitions and details will be provided at the bottom of this page, but to summarize in basic terms: we all have Prion proteins in our brains - when they transform into abnormal Prion proteins, symptoms similar to dementia begin to develop. Some cases are sporadic, but in Adam's case, it has been caused by a genetic mutation. Adam currently has difficulties with his speech, handwriting, coordination, judgment and memory. Adam's father passed away at the age of 47, when Adam was young - he's just learned that his father suffered from genetic Prion Disease, as well as his two half-brothers, who also passed away in their early life due to exact same diagnosis (one at 38 years of age and one at 43). Adam learned of this information upon his initial visit to UCSF last May, where he underwent two days of medical testing and blood work that confirmed the genetic mutation from the National Prion Disease Pathology Surveillance Center. Offspring have a 50% chance of obtaining this disease, so Adam and Brinden are very passionate about raising awareness not only for Adam, but also for Greyson should it be passed to him.
This beautiful family has more strength, hope, faith and love than most people ever experience; it pulls them through this trying and terrifying time in their life. Though fearful, they won't allow the fear to overtake the hope and optimism they have for a cure. Your donation will help support Adam's current medical treatments and necessary travels to see specialists (of which there are very few in the country with the depth of knowledge for this rare genetic disorder), help their family with financial obligations while he is unable to work and also help fund research so that one day there will be viable treatments, improved life expectancy and ultimately, a cure. There is much optimism in this field of medicine but greater awareness and more funding are vital. Thank you.
For more information on Piron Disease, click here:
http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm#264223058
Note: this GoFundMe page was created by a friend of the family with permission. 100% of the donations here will go directly to the Wohlstattars and to fund Prion research (less the mandated fees by this GoFundMe.com).
But on June 10th, 2014, his world changed when he was diagnosed with an extremely rare, genetic neurodegenerative disease that currently has a fatal life expectancy of 6-10 years upon diagnosis: Prion Disease.
"Prion Disease?" you may ask...Exactly. Most of us have never even heard the term "prion." Our mission in this campaign is twofold: First and foremost, to help support Adam and Brinden with their medical expenses and travel costs to see research and medical specialists at University of California San Francisco Memory & Aging Center (UCSF), while simultaneously raising money and awareness of this disease that is grossly underfunded and relatively unknown, despite its devastating effects.
Just four months after his official diagnosis, Adam had to step down from his administrative education career and is currently on medical leave for the remainder of the school year, so he may focus on staying well and spending as much time as possible with his family. Saying goodbye to his staff and students was one of the hardest things he's ever had to do, but maintaining his health and spending as much time as he can with Greyson and Brinden are his highest priorities.
So what exactly is Prion Disease? A link to a website offering more scientific definitions and details will be provided at the bottom of this page, but to summarize in basic terms: we all have Prion proteins in our brains - when they transform into abnormal Prion proteins, symptoms similar to dementia begin to develop. Some cases are sporadic, but in Adam's case, it has been caused by a genetic mutation. Adam currently has difficulties with his speech, handwriting, coordination, judgment and memory. Adam's father passed away at the age of 47, when Adam was young - he's just learned that his father suffered from genetic Prion Disease, as well as his two half-brothers, who also passed away in their early life due to exact same diagnosis (one at 38 years of age and one at 43). Adam learned of this information upon his initial visit to UCSF last May, where he underwent two days of medical testing and blood work that confirmed the genetic mutation from the National Prion Disease Pathology Surveillance Center. Offspring have a 50% chance of obtaining this disease, so Adam and Brinden are very passionate about raising awareness not only for Adam, but also for Greyson should it be passed to him.
This beautiful family has more strength, hope, faith and love than most people ever experience; it pulls them through this trying and terrifying time in their life. Though fearful, they won't allow the fear to overtake the hope and optimism they have for a cure. Your donation will help support Adam's current medical treatments and necessary travels to see specialists (of which there are very few in the country with the depth of knowledge for this rare genetic disorder), help their family with financial obligations while he is unable to work and also help fund research so that one day there will be viable treatments, improved life expectancy and ultimately, a cure. There is much optimism in this field of medicine but greater awareness and more funding are vital. Thank you.
For more information on Piron Disease, click here:
http://www.ninds.nih.gov/disorders/cjd/detail_cjd.htm#264223058
Note: this GoFundMe page was created by a friend of the family with permission. 100% of the donations here will go directly to the Wohlstattars and to fund Prion research (less the mandated fees by this GoFundMe.com).
Organizer
Andrea Watkins Dickinson
Organizer
Los Angeles, CA
