Hope for Adam
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:
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).
I am writing to inform you that Adam Wohlstattar passed away today, February 6, 2019 at 8:10 am. His passing was gentle and fast, attended by Brinden, niece Mia, myself and family nearby, as well as with the great assistance of the hospice staff at Moorpark Healthcare Center.
Funeral Services will be held at Mt. Sinai Memorial Park and Mortuary in Simi Valley at 10:00 AM this Friday, February 8, 2019.
Please know how much your love and support mean to Brinden, Greyson and our entire family at this time.
In lieu of flowers, please consider making a donation to this Go Fund Me site, as all donations will go to UCSF Memory and Aging research for Prion Disease." #hopeforadam lives on.
We love you, Adam.
It's been quite a while and a lot has developed so we wanted to share what has transpired.
The Wohlstattar family (Adam, Brinden and their son, Greyson who is now 6 1/2 years old) has endured many changes over the past year. For a time, a caregiver moved into their home to help support Adam's ever growing physical needs. After a few months, it was apparent that he needed much more consistent and round-the-clock care. As a result, the family made the difficult decision to move Adam into a memory care facility about 15-20 minutes away from their home.
At this facility, Adam receives 24-hour care and assistance with all personal and social care needs tended to. There are activities, meals, and friendly caregivers and nurses that assist Adam with everything from showering to eating and dressing. They offer him social activities such as game nights, Poker, trips out to stores, dancing, and other memory-care specific activities.
While this move was necessary for Adam's level of care that is required, the cost for this placement is significant and is not covered by health insurance, long term care insurance (as this was an unexpected illness), or state funding (Adam is a retired state educator). He receives limited disability funds and Brinden works full-time to try to make ends meet.
Adam's exact prognosis is unknown, however, at the time of his official diagnosis in 2013, they were told it was 6-10 years from onset of symptoms, and the exact date of that wasn't ever exactly determined.
Everyone's financial contributions, efforts to help the family with time, emails, calls, and all of the prayers are incredibly appreciated and have helped them through some of the toughest days during this battle with Prion Disease.
Anything more we can offer to the family at this very delicate time will help with providing Adam this specialized care and his medical supplies.
#hopeforadam lives on despite the fact that his condition is deteriorating. We knew there was no magic cure available yet, but we continue to hope that one is found and that Adam's struggles today are not in vain.
Let's rally again around this family and help make him and his family feel as loved and cared for as we possibly can.
Thanks to all for your contributions and prayers, they're both needed now more than ever.
Apologies for the long delay but we have some updates to share - including the details for the upcoming Hope for Adam Gala that will be held June 10th, so please save the date! Link below for more details:
Also, Adam recently visited UCSF for a checkup this April, his first since June 2016. A swallow test, optical test, an hour and a half long MRI test, extensive cognition testing are just some of their rigorous day with the medical staff. There was significant progression since the June visit and they asked Adam to return in another 6-months. They suggested that Adam may need increased care sooner than they had anticipated.
On a bright note, Adam and Brinden were able to visit the Ellen Show as VIP guests with some friends and they had a blast!
The Wohlstattars are doing the best they can to keep their hope strong for Adam, but his health continues to deteriorate. Supporting the Gala and this site will help them with future care for him as his needs get greater. We all thank you from the bottom of our hearts for the love, support and prayers.
Hope for Adam Update: This year, Megan Feinstein Zemnick and Tiffany Brown are working on the 2nd Annual Hope for Adam fundraiser to help support our growing needs for Adam's continued care. They have some incredible ideas for a fun-filled evening but we are in desperate need of a space to hold the event on a Saturday in March or April, preferably in the Ventura County area, as close to Adam's home town of Thousand Oaks, as possible. If you or anyone you know has a space for about 150, I would be so grateful for your recommendation and connection to make this year's fundraiser even bigger and better than last year! Adam and I thank you all so much for your support as we continue to face this disease head on. With gratitude and love ❤️ please message me, post comments, reach out to Megan or Tiffany if you have any ideas xoxo
Adam and family, I got here from the ABC7 article about you. I am so sorry to hear about your diagnosis. I just wanted to offer a few words of hope for the long term! My mother-in-law died of genetic prion disease 5 years ago and we found out that my wife inherited the mutation. We became scientists to fight this disease, and this has given us a new source of optimism for the future. We wanted to send the message that even though it takes years, there is progress on understanding these diseases and developing therapies. We are sending our love and thoughts to you. all best, Eric Minikel & Sonia Vallabh
I watched the ABC7 news story on Facebook and felt compelled to contact you. My husband died from familial CJD on November 17, 2014. His early symptoms began in Dec 2013, with more obvious signs showing up in late March 2014. His progression was rapid, and left our family in a state of confusion & panic as we tried to figure out what was going on. I just want you to know that you're not alone. Unfortunately, many others have experienced a similar situation as yours. There are support groups on Facebook that are very helpful and are full of people who have been in your shoes: CJD Family & CJD Awareness. They are closed groups, only meant for families & loved ones of those with CJD or other prion diseases. Please consider joining one or both of these groups. I'm very sorry for what your family is going through. I know all too well how you are feeling. Prayers for strength, mercy, peace and courage for your family. God bless.
Not sure why but I think my other comment got cut off.... Anyhow, my mother in law passed away from CJD 3 years ago and the pain is still very fresh for us each day. I will be praying for your strength and courage as well as your families during these very difficult days. I hate this horrible disease but I thank you for sharing your story and raising awareness so that we can continue to be hopeful for a cure. My heart goes out to you.
Dear Brinden, You might want to check out this website http://fitness.mercola.com/sites/fitness/archive/2015/01/30/time-restricted-eating.aspx?utm_source=facebook.com&utm_medium=referral&utm_content=facebookfitness_ranart&utm_campaign=20170527_time-restricted-eating High fat diet help with brain diseases
I'll be Adam's buddy! Just sent Brinden a message on FB :)
I am so sorry to hear this and yet he will suffer no more. I didn't know him well but enjoyed him so much at Valley View Middle School. My prayers go to all of this family in this difficult time.
Your story pulled at my heart. I have a daughter who has 9 rare and incureable genetic disorders. She is the only one in the world with all 9 combined. We moved across the country to Colorado to try Cannabis oil because nothing else was working. 2 yrs later, my daughter is alive, happy, talking, walking, dancing and enjoying the life of a 6 yr old. I am writing to suggest you maybe try it, if you haven't already. Being here in CO, I watch the incurable flock here and suddenly they are being cured after doctors said they couldn't be, including my daughter. I have witnessed brain tumors just disappear. Those with Cancer, Epilepsy, Crohn's, MS, Lyme's, Parkinson's, Dementia, and so on, be completely cured or managed. 2 years ago before we moved, I never thought a plant could do that, but after living it and seeing it everyday with my own eyes, I now believe in the miracle of cannabis. So after reading your story, I felt compelled to tell you in case you didn't know about this treatment. I wish your family well and I will be praying for you. Many Blessings.
Our hearts go out to you and your family. We are praying for you all and hoping for a breakthrough soon.
Watching your story on abc, my heart is just crumbling for you and your family
My heart goes out to Adam, Brinden, Greyson and their extended family and friends. However, it may be possible to help STOP the disease. Please read The China Study by T. Colin Campbell and his follow-up book, Whole. It couldn't hurt to try the recommended "whole-foods (natural), plant-based diet. The Gerson Clinic in San Diego offers a simple alternative healing. So does Dr. Robert O. Young in Escondido. Another source of help for this natural method of healing is www.vegsource.com . May you find your miracle and heal completely very soon! Hugs. xoxoxo