Dear Friends,

As most of you know, my dad is in the end stages of prion disease.  After a devastating progression of neurodegenerative symptoms over the last year, his condition now is described as akinetic mutism -- he can no longer smile, talk, laugh or move most of the muscles in his body, but he is still very alert and follows moving objects with his eyes.  Fortunately, he is mostly in good spirits and does not feel any physical pain.  

Witnessing the unfairness and cruelty of this disease has made the past year an excruciatingly heartbreaking one, but I have been touched and found immense comfort in the outpouring of love and support from our community.  Thank you for your loving messages and calls, and to all who have donated meals, care packages, and gifts to my dad and my family.  It has meant a lot to us.

October is fundraising month for the CJD Foundation, which provides amazing support to families and caregivers of prion disease patients, and grants to scientists working on the most promising research towards a treatment or a cure.  They were one of my first calls when my dad was diagnosed, which ultimately made a huge difference in the kind of care we have been able to provide for him.  If you are available, please join us on Oct 18 to walk/run/bike to help raise awareness and funds for prion disease research!

WHEN:  Sunday October 18, 2020 @ 10am

WHERE:  Meet at my driveway at 9:45am.  We will start walking towards the Rose Bowl at 10am sharp.  If you're late, come down and find us!

WHY:  Prion disease is one of the rarest brain diseases out there.  Hardly anyone has even heard of it because general (sporadic) prion disease affects only ~1 in a million people.  The specific genetic mutation that affects my dad occurs in about 1 in 20 million people.  Unfortunately, in all genetic prion disease cases, offspring have a 50/50 chance of inheriting the mutation of the affected parent.  In all prion disease cases, it is 100% fatal, usually within a few months to a year from diagnosis.  There is not yet a cure or any preventative treatment.  However, scientists at the Broad Institute of Harvard/MIT and Ionis Pharmaceuticals are hoping to begin the first trial of an antisense oligonucleotide preventative treatment by the end of next year.  This has the potential to be a game changer for those who are carriers of genetic mutations for prion disease (average age of onset ranging from 30s-60s), thereby potentially extending each lifespan by decades, so every dollar counts!

HOW:  It's super easy!

1. Register to join our team, Prion Slayers!  Registration is $30 for adults and $20 for children 12 and under.
    

2. Wear purple and walk with us on Oct 18.  If you're unable to join us in person, walk locally wherever you are! 
    

3. Post a photo of yourself at the event w/ these hashtags: #strides4cjd #curepriondisease #cjdfoundation #morelife

It would mean the world to me if you would join me and my family in honor of my dad and his brave battle against prion disease.  I know that if he could, he would be out there walking with us.  

Hope to see you there!

Love,
Cindy