Fundraising Page: Renee Middendorf in Memory of Dora Middendorf

Fundraising for the CJD Foundation

Renee Middendorf in Memory of Dora Middendorf

Give Hope to those affected by CJD

Creutzfeldt-Jakob Disease (CJD) is a rare, rapidly progressive neurodegenerative disease, one of several Prion Diseases caused by prion proteins that misfold in the brain. There is no treatment or cure and the disease is invariably fatal. The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. We carry out this mission through: Family support including a 7-day HelpLine, referrals, support groups, and teleconference speaker series Education and information for families, caregivers, medical professionals, and funeral professionals Advocacy with political representatives and public policy makers Annual Family Conference that brings together affected families and prion disease experts Family Workshops held around the country Collaboration with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations Communication of current research and Foundation activities via newsletter, social media, emails, and family teleconferences Research grant program, with international awardees selected by our Scientific Advisory Committee

In the Winter 2017,  my family noticed changes occurring within my dear Mom;  a little confusion, mix-up of words,  and more dramatically -- a 20-lb weight loss over the course of 9 months without any change in lifestyle. She acted withdrawn,  and played off any peculiar behavior really well.   Little did we know, this was the start of a cruel and devastating road that would ultimately be my Mom's demise.

It took us 7 months and countless doctors appointments to get a definitive diagnosis of CJD.  All the while,  pieces of her brain function were being impaired -- decision making,  ability to follow directions,  loss of short-term memory,  hyper sensitivity to noise, paranoia,  mood swings and so on.... it was extreme and extremely difficult to deal with as one of her primary caretakers. CJD is a disease that is arrived at by process of elimination,  although there are some diagnostics that point towards the disease (MRI,  RT-Quic).  After trying and ruling out dozens of other potential ailments,  we ended up with the worst possible one.  The one with no hope;  the invariably terminal one.   It was soul crushing. Only a miracle could save her - and to my knowledge there are no miracles with CJD.  Mom fought bravely against this monster of a disease but succumbed to it in March 2019.

This fundraiser is what I can do to help provide some HOPE for future families and patients of CJD. There needs to be more research and education about the disease,  so that it can be detected earlier and ideally, slowed down or reversed.  My Mom was so humbled that her brain could be donated to the CJD Foundation to support prion research.  She was an amazing woman -- always looking out for others, especially her family, before herself.  In her memory, I will continue this annual fundraiser to support the CJD Foundation.  I appreciate all who stand with me on this.  Thank you for your support!

$17,377.24

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$20,000.00

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My Supporters

  • Renee Middendorf December 2023 $530.00
  • judy pribula I miss you and love you, Dora. November 2023 $50.00
  • Family Conference 2023: Cure CJD Hats August 2023 $630.00
  • Anonymous July 2023 $200.00
  • Nancy Lake March 2023 $53.00
  • Anonymous January 2022 $6,975.00
  • Christine Rostafin January 2023 $4,650.00
  • Renee Middendorf Miss you Mom! December 2021 $1,060.00
  • Family Conference 2023: Cure CJD Hats August 2023 $630.00
  • Renee Middendorf December 2023 $530.00