• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What patient needs are most critical for an endowment fund to help out with?

L

leelaplay

member
Messages
1,576
Hi all. I haven't been able to be here much in the last few years as it's too much work for my brain. I'm asking for your help. I'm working on my will, which got me working on an endowment fund, mostly to help out patients whose needs aren't being met in full, but also to encourage others to do so, and also to improve visibility of ME and CFS and spread the word on just how seriously debilitating it/they are. What do you think is most important?

The other thing I'm working on is autopsies for all patients who want them, preferably done by our researchers, or with protocols for pathologists to follow and someone to collate the results for researchers. In the meantime the Brain Donation program in the US seems good - they're already looking at ME.

Could you please fill out this survey? All ideas welcome. I'd like to make this as useful as possible. MEFMBC was kind enough to do it up for me as even trying to redo it here and on other sites was too much.

https://docs.google.com/forms/d/e/1FAIpQLSdcIX7I_F9Gyj8S9VFVf4n3KaVOnWie590R-mqiyPqMIN5EdA/viewform
 
J

Jennifer J

Senior Member
Messages
997
Location
Southern California
"leelaplay, post: 829132, member: 226"]I'm working on my will, which got me working on an endowment fund, mostly to help out patients whose needs aren't being met in full, but also to encourage others to do so, and also to improve visibility of ME and CFS and spread the word on just how seriously debilitating it/they are. What do you think is most important?

The other thing I'm working on is autopsies for all patients who want them, preferably done by our researchers, or with protocols for pathologists to follow and someone to collate the results for researchers. In the meantime the Brain Donation program in the US seems good - they're already looking at ME.

Could you please fill out this survey? All ideas welcome. I'd like to make this as useful as possible. MEFMBC was kind enough to do it up for me as even trying to redo it here and on other sites was too much.

https://docs.google.com/forms/d/e/1FAIpQLSdcIX7I_F9Gyj8S9VFVf4n3KaVOnWie590R-mqiyPqMIN5EdA/viewform
Click to expand...


Thank you @leelaplay! :hug: Creating a fund to help patients whose needs aren't being met and where to donate my body to advance ME/CFS research has been on my mind for some time now to check into, to encourage others and to make happen.

I was thinking if my circumstances, and finances, ever change for the better it would be good to set up something to help people with this illness that need more money (money in present time and left in a will too) so people without food, need more food or help with food can have it, as well as medical help, physical help and housing help.

I also wanted to post something of that nature at some point so people can help those who need help. So many of us with this illness, myself included, are stuck in bad situations and in need of much help . As several here, I hate that I'm not in a position to help others who need this kind of help. Hopefully that will change. Thank you for doing this, posting it and encouraging others (and thank you MEFMBC for doing it up for you). :angel: I will fill out your survey as soon as I can.

(This is responding to your first post. I see you posted something else right now, I haven't read it yet.)

Edit: In the first paragraph, added the word creating.
 
Last edited:
L

leelaplay

member
Messages
1,576
Thanks so much Jennifer! Great minds think alike. :D I will post on what happens, but with my life on severeME time it'll be a bit slow to find out what's possible. I'm hoping I can have enough $ to set up an endowment fund and pay the admin fees and provide a few grants. THen hopefully others from my community can contribute to it so more and bigger awards can be granted, others will do something similar, piggy-backing on or on their own..... Wouldn't you love to be a millionaire - maybe billionaire these days - for all the things we'd like to do to forward ME research, treatment, awareness, care.....?
 
L

leelaplay

member
Messages
1,576
Thanks for sharing your ideas belize44! I know - too many of my friends are not getting adequate treatment, housing, homecare, disability income................. So I do all I can to advocate etc to change things, but this idea occurred to me to help people in the meantime.
 
You must log in or register to reply here.