I do not understand why everyone with organizations helping people with CRPS/RSD feel that it is a competition. Why can we not work together to help one another? Why attack others who are trying to help those with CRPS/RSD.
I know that the CRPS community is a representative of society where unfortunately there are people who are nasty and unscrupulis. You would think that because they know how difficult it is to live with this monster, that they would have more compassion for one another.
I could sit here writing and name names of those who are making it their mission to try to stop CRPS Partners In Pain, Inc and our board from helping others. I will not stoop to their tactics. I will not give them the satisfaction of affecting the good work that we are doing for others.
Everyone associated with CRPS Partners In Pain, Inc volunteers their time. No one take a salary. We all either have CRPS or have a family member with CRPS. Every donation goes directly to help those who otherwise would not be able to get treatment. Additionally, we try to provide information on CRPS/RSD. RSDSA.org has great research articles and information on learning more about CRPS/RSD. I support their efforts 100%. The board of CRPS felt that there was no need to duplicate the fine work that RSDSA.org is doing with research funds and education. They also have a small fund to help people with RSD catch up with bills and assist with treatment. We felt that we could be more effective just trying to get those with CRPS who otherwise would not be able to afford treatment some financial assistance.
There are several CRPS/RSD non-profits. We each need to work together toward the betterment of the CRPS/RSD community. I freely vow to help any of the other organizations that represent chronic pain patients or specifically RSD. Some of these organizations are:
www.rsdsa.org
www.rsdhope.org
www.forgrace.org
http://powerofpain.org
US Pain Foundation
As members of the chronic pain community, we need to work together.
Hi Nancy,
ReplyDeleteAs the widow of a spouse who suffered in agony for 11.5 years with CRPS, I applaud you in this effort. There are too many battles to be fought just trying to get appropriate treatment, funding, understanding, research,and in trying to stay positive and have HOPE! No one can afford to waste time, energy and/or funds battling each other in a competition for recognition of a NON-PROFIT agency that is trying to help those with this wicked disease. Someday, I would like to be able to reach out and help those in financial need to obtain treatment or ease their burdens in any other way possible. As you know, there is no shortage of those needing help. God Bless you and all who are devoting their resources towards such a noble cause. You are a selfless person to be able to do what you do despite being in pain yourself. We need so many more people like you willing to sacrifice for the good of their fellow sufferers. I cannot imagine anyone being anything but sincerely grateful to to you. I have no time for nasty people in my life. Thank you for all of your efforts.
Rosemary, In Honor of John
Thank you Rosemary. When you are ready, we would like to dedicate a page on our website to John and have you write it.
ReplyDeleteNancy
Thank you Nancy.
DeleteAlthough it is too late to help John, it is not too late for John to help others. I would be honored to have his name be associated with CRPS Partners In Pain. I know he would want his death to have some meaning. I will keep in touch. Rosemary
Nancy I so agree with you on all of us needing to work together I have contacted other groups on us all working together and most are not for it this really hurt me as I did start a support group here in Oklahoma that was before all the new facebook and twitter so most people just use this now but I to would love to see us all as one that way we could accomplish so much more thank you for all you do
ReplyDeleteThank you for your response. I wish that all of the non profits, support groups and authors would come together as a cohesive unit, but for some reason it is not the case. It greatly saddens me.
DeleteNancy, I so appreciate all the support I have gotten from your FB page. I'm so sorry for all the hassles, to put it politely, you've been put through. It would be nice if everyone worked together, especially for a cause that helps people who are suffering so much but unfortunately that doesn't seem to be the case. Thanks for all you do despite the obstacles. Trayce
ReplyDeleteThank you
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ReplyDeleteBarby,
DeleteThank you for your response. I'm not sure what you are asking when you say:
"(correct me if I am wrong) I don't believe you have done any major projects yet (that are not fundraisers)" Are you referring to educational projects or providing financial aid to those seeking assistance to get treatment? We have done several CRPS gatherings in different parts of the country. We have also assisted those who would not otherwise be able to get treatment. We haven't been able to help as many this year as we would like to but as fundraising increases, we hope to help more with financial assistance in getting funding.
CRPS Partners In Pain, Inc is willing to work cooperatively with other groups. I am a Pain Ambassador for US Pain Foundation. I am happy to work with any of the non-profits.
Thank you for your response
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DeleteI find it interesting that you say you want to work together in public, however in private you have been bashinh Barby Ingle for years? you are jealous she went and spoke in front of congress,and you propogated all the lies being circulated today about her! i think it is pathetic that you are so 2 faced that you act so nicey nice to people here and on all your public sites, but you and your "board have been bashing her for years. not to mention the idea for PIP was julie zausmers. You specifically told me she suggested it to you and diane,and then you steal it right under her. i have the thread where it says that. the ONLY one dividing the RSD community is YOU Nancy! I know you will take this down,but it is sad that you are the one responsibile for the seperation. Oh! and the EIn you just posted, does NOT come up on the IRS site. you have applied but have not yet been approved. you were using national service charity's EIN, but you didnt check before you signed,and he was not legit either. His was revoked for not paying taxes for 3 yrs. s the founder and ED,it is your responsibility to make sure those things are done prior to taking money from anyone. i told you that my self in nov, and you disregarded it. its a shame you bash someone who has done as much good as barby Ingle and power of pain. to the woman who lost her husband john? Im terribly sorry! i hope you will call iRS before you part with ANY money and make sure who you give to is legal to accept it! Nancy? you get all your board members to go attack people for you,so you look like the innocent victim.when you are no where near innocent or a victim. you are not even a nurse and have been telling people you ae for years. By law unless you have a current license, you may not call yourself a nurse. Its Illegal and unethetical,as the lady on amazon,who IS a nurse on the nursing board told you. OH! you accused me of writing that, to jim..yet ANOTHER one of your lies,to look like the victim......:( so sad nancy!
ReplyDeleteYou need to get your facts straight. Prior to 18 months ago, I had never heard of Barby. In a veteran group, we discussed an analogy between ketamine & chemo. I never wanted to go to DC. Barby posted that she needed help. I volunteered and never heard or said a word about it after.
DeleteWhat was in my private, privileged message were thinks that I had heard. Above, she talks about working together while at the same time her friends are trashing me.
Get a life. We all have one common goal, to help the CRPS community, so lets get back to in. I often refer people to RSDSA and I support the, financially. They do a great job funding research and CRPS Awareness. It is my understanding that POPF also promots CRPS awareness through interviews and other media. As I have not seen their mission statement or financial statements, I do not know anything else other than her Facebook Posts.
I do not claim to be a victim. I just want to go on doing the work that I do within the CRPS community without having to take time away from my volunteering and without the pain of flares caused by cat fights.
Again posting without an identity attached, I do not know which of you I'm writing to. Please just leave me alone since your actions show me that it is impossible to work in harmony. How sad. I will continue to work with RSDSA and US Pain Foundation any other group that asks for my help.
I have no need to create false identities on Facebook, Amazon or here. I am proud of who I am and what I do so I do not need a fake identity.