Help Charlie's Wake: A Celebration of Community

Hello Community,

We are requesting help for the Knuth family, who recently lost their 17-year old son, the famous Charlie Knuth, to the devastating effects of Recessive Dystrophic Epidermolysis Bullosa (RDEB-- or the simpler form, "EB").

HELP:

Charlie's family needs END-OF-LIFE help for Charlie's memorial--- Will you please donate?

NO LIFE INSURANCE:

Parents of Charlie, Trisha and Kevin Knuth, could NOT purchase a life insurance policy because NO insurance company would insure Charlie, given the severity of his disease and the odds of his survival. Therefore, there is no funding for his end-of-life expenses.

THE NIGHT CHARLIE DIED:

On the night of Charlie's death, his mother, Trisha, said, "Please do not offer 'thoughts and prayers' or 'flying with butterflies' stuff. He would hate that." Instead, Charlie's mother wanted stories and pictures of Charlie to offer their family comfort in their bereavement on the night Charlie passed.

COMMUNITY:

Charlie's existence was deeply rooted in community. And, it is because of Charlie's rare disease that his neighbors, near and far, came together in spite of any differences in order to fight for a cure. Charlie's community helped this family through the painful, heart wrenching, time-consuming, exhausting, and *economically dreadful* impacts of RDEB. It was the proverbially silver lining.

CELEBRATION OF COMMUNITY - IN MEMORIAM

Trisha and Kevin Knuth say that Charlie would have wanted an outdoor Celebration of Community as a memorial-- in his memory. So that's exactly what we're trying to do.

But, we need your help.

The last few years have been especially challenging, and we want to connect the community in Charlie's honor and to comfort Charlie's parents and siblings. The Knuth family wants the community to make MUSIC, eat food, share stories about Charlie (or just hear stories about Charlie), play games, etc. And, since Charlie's story is known nation-wide to some, we would like the event to include EVERYONE who wants to attend. Whether or not you knew Charlie, we want YOU to come. In Charlie's memory.

We are trying to raise funds while simultaneously planning a date, location, music, food, etc. More details to come as this develops.

Please donate if you can.

And, please share this post publicly.

Thank you so much,

-Tara, Kristie, Nicole, Patti, and Sarah

P.S.

If you would like to read more about this disease, there are a lot of articles out there, and if you're into reading scholarly articles, here's a good one: https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01811-7#:~:text=Patients%20with%20RDEB%20experienced%20worsened%20quality%20of%20life,subtypes%2C%20other%20skin%20diseases%2C%20and%20the%20general%20population.