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Dialysis: General Discussion
Dialysis Advocates for Patients
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Topic: Dialysis Advocates for Patients (Read 2060 times)
Fierceheart
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Dialysis Advocates for Patients
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on:
March 02, 2008, 09:16:30 PM »
Hi
My name is Tabitha I am a Co-founder of Non-profit organization called Salem Dialysis Advocate for Patients. In the future will drop Salem. I want to tell you about my organization. We are just starting out. There is a much-needed help for dialysis patients. A lot of them are on disability or just barley making it from working, not just financial issues, there so many emotions that people go through when on dialysis, not only that there is social issues. Being on dialysis myself I see first hand what they go through and can relate to their needs.
Once we get exempt, we will be going after grants and doing fundraisers and hopefully getting sponsors. Some of the programs that we want to have are,
Food: Right now we are in the process of putting an actual food bank in to the centers. This makes it easier on patients, so many can’t get to food banks, and they don’t always have food for our dietary needs. I don’t just want to have shelf food I want to expand it so that the food bank will include fresh meat, produce and fruits. So many of us can’t always afford these items or at least keep them in our house from pay to pay day. We are meeting with the county food Bank on The 11th to see what they can do to help.
Rent/Mortgage, Sometimes for one reason or another people get behind, or their rent goes up and they can’t afford to move or pay the difference. We hope to be able to help with moving, or finding a better place for them, or make sure they don’t loose their house.
Utilities: We all know the cost of heating in the winter can just knock us over. We want to be able to help people who may need help paying for electric, gas, and water.
Transportation: Now this is a big issue here, this will include paying for public transportation to major car repairs, and gas.
Life Enrichment this is helping people have fun, for example giving them certificates to go to dinner at there favorite place, to seeing a movie, or maybe bowling and bingo. The point is to help people get out of their house and live a little; show there is life to be lived. This will also include parties we have at the center, encouraging participation; we feel if you feel mentally good, your attitude will be good.
Support groups, for caregivers and dialysis patients. We hope to have counseling for those who need it.
Household: this will include everything from furniture to appliances, dishes, bedding and so on.
I think that covered most of the programs we want to have, I am sure as time goes on people will give us there in put and tell us what they want to see and we will add it in.
Here is our mission of statement
Salem Dialysis Advocates for Patients
Mission Statement
For years the well being, safety, and financial security of dialysis patients have been under met and under funded. Several years ago the National Kidney Foundation for the Northwest had to close their office. We created the Salem Dialysis Advocates for Patients Organization; we stepped in with much concern and with a great endowment of passion for the support of dialysis patients.
Our purpose is to provide support services for dialysis clinics; like a safety net. To meet any need or issue that can’t be met by the clinic due to financial or time limitations.
Furthermore, we believe that each patient shall have a better outcome with the proper support and it is of the utmost importance to our organization to help foster a positive outcome for each patient.
If anyone has any knowledge of fundraising or where to go as far as go after grants, and creating a web site. I would love to hear from you. Advise, feed back even ideas are always welcome!
If your from Salem or near the Salem area and want to get involved let me know, if your interested in trying to help your own center, I be happy to help and any way I can no matter where your located at.
If I can answer any questions feel free to ask, I will keep you posted as we progress with the organization.[/color]
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Salem Dialysis Advocate for Patients
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CW
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Yeah .............That's me!
Re: Dialysis Advocates for Patients
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Reply #1 on:
March 02, 2008, 09:33:35 PM »
Your idea is great and seems to be a huge undertaking. I wanted to know if you explored the resources currently available for some of the services you want to offer. Such as HEAP for help with utilities and foodstamps for help with food etc. (there are many more but you will have to do research to find them) so even if you do want to develop your own programs you will have an established infrastructure to fall back on or to use as a model.
Just a suggestion-good luck!
CW
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*Common Sense is an uncommon thing
20 years navigating ESRD
Had a transplant but it rejected
To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell. ~Edna St Vincent Millay
Fierceheart
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Re: Dialysis Advocates for Patients
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Reply #2 on:
March 02, 2008, 09:38:42 PM »
I know about food stamps but never heard of Heap I will have to look into that.
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Salem Dialysis Advocate for Patients
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CW
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Re: Dialysis Advocates for Patients
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Reply #3 on:
March 02, 2008, 09:54:24 PM »
I know this resource does not benefit you directly
http://disabilitybenefits101.org/
but it is an very good resource for California residents - I am telling you about it because it talks a lot about federal, state and county programs for those with disabilities(and those without). Maybe it will spark some ideas
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*Common Sense is an uncommon thing
20 years navigating ESRD
Had a transplant but it rejected
To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell. ~Edna St Vincent Millay
okarol
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Photo is Jenna - after Disneyland - 1988
Re: Dialysis Advocates for Patients
«
Reply #4 on:
March 02, 2008, 09:59:19 PM »
Sounds like a big project - I hope it works out!
I think social workers could be better advocates if they had the proper training. Sadly the ones Jenna dealt with were not very knowledgable.
FYI:
The following direct financial assistance programs are offered by the American Kidney Fund to needy dialysis and kidney transplant patients nationwide: Individual Grants Program, Pharmacy Grant Program, Disaster Relief Program, Travel-Related Dialysis Program. For more info go to
http://www.kidneyfund.org/fpa_patient_aid.asp
-- American Kidney Fund 6110 Executive Blvd. Suite 1010 Rockville, MD 20852
Questions? Call 800-638-8299 or via email at helpline@kidneyfund.org.
More help listed here:
http://goldbamboo.com/topic-t2810-a19630.html
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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
Fierceheart
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Re: Dialysis Advocates for Patients
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Reply #5 on:
March 09, 2008, 07:35:23 PM »
This is big project, but feel someone needs to help us, thank you for the links I will check them out!
I need fundraising ideas and wounder if anyone might have any that I could considar. If also anyone is expierence in this love to hear suggestions, past expierences anything that would help us.
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Salem Dialysis Advocate for Patients
Co-founder
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