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Author Topic: Who needs the help more? Opinions please...  (Read 6334 times)
kellyt
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« on: July 29, 2010, 03:26:47 PM »

Ever since my transplant I've been saying I want to give back.  I have thought about volunteering for Kidney Foundation races and such, but just never got off my couch.  Same with donating time at my local dialysis clinics.

But now I have my chance!  My husband and I are getting ready to start a non profit.  I can't go into the details as of yet cause he just met with the attorneys todays and I have not yet gotten involved.  I meet with them next week.  ANYWAY, my question is "Who needs the help more?"  Scholarships for ESRD students about to enter college?  ESRD students already in college?  Donor families?  ESRD patient families?  HELP!!!   Any ideas would be welcomed!!!

Thanks!

Oh, also I'm thinking about calling the charity "Etta's Gift".  Etta is my sis-in-law and my loving, living donor.   :)   Ideas on names would also be welcomed, keeping Etta in mind of course.  :)
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
lola
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I can fly!!!

« Reply #1 on: July 29, 2010, 05:36:03 PM »

Kelly KEEP the name, what a great gift to your AMAZING donor..............what about helping anyone who needs the help. People could fill something out and maybe a "smaller" gift could be giving out to more people???? just my  :twocents;
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texasstyle
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« Reply #2 on: July 29, 2010, 07:41:18 PM »

What a great thing to do! I'm sure you will find that giving feels just as good as getting, if not more. You probably already know that though. I love the name. 1- because it is your donor's name and 2 lol, because I love Etta James. Oh geez, the list can be endless for this one. I guess it'll need some research but I think that many times a donor's medical costs are not covered by insurance. (maybe someone will correct me) I could be way off, but I feel that is an area that could use great help if so. What a special thing you're doing.
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caregiver to husband using in-center dialysis 4 years
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #3 on: July 30, 2010, 01:18:50 AM »

I love the name too (My great grandmother was Etta Mae.)
Sluff and I have discussed this too, if we could raise money, how would we help IHD members who need assistance? I think it needs to be on a case by case decision - like the way grants are given, you can help a few people each year.
If I had a wish, it would be to help support annual meetings for IHD, because the get togethers I have attended have been life changing for me, and I imagine other members would feel the same. We pooled funds to pay for airfare so some members could attend. Makes me smile to think of it.
Good luck, I know you will do great things!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #4 on: July 30, 2010, 01:29:37 AM »

I don't think enough attention is paid to the mental and psychological health of people struck with CKD/ESRD.  I would like to see more patients offered good, professional counselling; this isn't something that a lot of insurance policies cover.  Maybe a non-profit could help with this sort of expense.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
paris
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« Reply #5 on: July 30, 2010, 07:54:32 AM »

What a wonderful idea Kelly!   I also, love the name.  Keep us updated and let us know what we can do to help.   You have a very kind heart.    :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
MooseMom
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« Reply #6 on: July 30, 2010, 12:25:04 PM »

How about directing funds to a non-profit that will help get dialysis patients up and exercising?  I'm sorry, but I can't figure out how to insert links/copy and paste on my laptop...it doesn't work like my old computer, stupid windows updates....but go to Okarol's posting about exercise in the News Articles forum and read about how a dialysis patient got funding to help her get fit again.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
JasonEb
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« Reply #7 on: September 18, 2010, 04:25:19 AM »

I know I'm way late on this topic, and the major decisions have been decided, but I thought I'd still chime in with my idea.

How about a fund to help pay for basic things that Medicare/Medicaid/some insurances don't cover:  Dental health and eye exams/eyeglasses.

Or how about a patients advocacy assistance that ISN'T in bed with the government/dialysis units/doctors?
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gothiclovemonkey
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« Reply #8 on: September 18, 2010, 05:32:22 AM »

another good idea,
have rescorses for people, like single parents on dialysis.... to help with child care so they can get treatment, there is no such thing available at this time. I wanted to find out about starting one for this, but i have no idea how lol
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"Imagine how important death must be to have a prerequisite such as life" Unknown
HemoDialysis since 2007
TX listed 8/1/11 inactive
LISTED ACTIVE! 11/14/11 !!!
Sluff
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« Reply #9 on: September 18, 2010, 05:43:46 AM »

The need is so great in all areas.   Anything you do Kelly would be more than doing nothing.  I have many ideas and plans for the future but funding and time are not on my side at this time. One of the most successful that I can think of is Lori Hartwell. The best thing to do is once you make your decision is to stay on the business side of your organization and realize you can not help everyone. Just set your goals and go for it.
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kellyt
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« Reply #10 on: September 18, 2010, 06:54:39 AM »

Thanks Sluff.

Etta's Gift now has a Tax ID!!!  And lots of other paperwork to put in files.  :)  Next week I think I'll be able to go open the bank account.  Then I'll order business cards.   And then I'll start attending some non-profit help seminars/luncheons!  I have to learn how to make some money!!!!!  I also need to create a donation request letter to send to businesses/companies in hopes for either monetary donations or food/service/etc.  I would love to have some sort of benefit function in the Spring of 2011.  I'd love to do something sooner, but I think it will take that long to get some funds together!!!!   Kidney disease touches so many people either in their immediate family, extended family or friends.  I really hope this can become an organization/charity people will feel passionate about donating to and supporting!!

I'll post our "goals" or "intentions" later.    This is happening!!!   We are making the formal announcement to Irene (Etta a.k.a.  my donor) on Nov. 5th - Our 2 year kidney anniversary!!!!   :cheer:
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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