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abbsmom

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AMERICAN CANCER SOCIETY FOUNDATION
October 22, 2009

My Reason to Relay My reason to Relay is to educate the community on what is and IS NOT being done for those inflicted with this devastating disease. When our daughter was diagnosed, we thought we could contact the organization that we had been affilitated and raised over $70,000 for over the past five years--The American Cancer Society Relay For Life. We thought there would be endless opportunities of support not only for us, our daughter and our family, but for others we met along the way traveling this terrible journey. We quickly discovered we were wrong. We tried staying in Hope Lodge...can't because our daughter is under 18. Tried for other services...refused. We were told directly by an American Cancer Society staff member, and this was repeated to us numerous times, that there were no services catering to the "young" cancer victim. The American Cancer Society told us that the services they provide are catered to the "older adult" and their "services include mostly prostate and breast cancer victims, because that is who we receive funding for." That certainly shed a different light on all of those young survivors walking the survivor lap and all of those youth teams participating in Relay. It also posed another question...."Where does the money go?" After raising over $70,000 as a FAMILY team for the Relay For Life, I still ponder that question. The only reason we have continued this year is to show our support to our daughter who, WITHOUT the help of Relay For Life and American Cancer Society, is a SURVIVOR of Stage 4B Hodgkin's Lymphoma. We were told that these issues would be brought before the Ohio Task Force and even on a local level. Guess what? Several months later, we still have not received any different information. We were "appeased" with "words" so that we would keep quiet during Relay For Life. Are these issues ever going to be addressed? Think about the "help" we have received. Think about the "help" any other family member/friend has received from the American Cancer Society. Other than a support of friends, which can be found in many, many, many other places, what services has your loved one received? Is your Relaying worth it? What are you REALLY doing for our local cancer victims? THINK ABOUT IT! Our Reason to Relay After five years as a family team, raising over $70,000 for the American Cancer Society Relay For Life, we found ourselves finding out first hand where the money goes... When we asked what services could be provided to us when our then 15 year old daughter was diagnosed with Stage 4B Hodgkin's Lymphoma, we were told, by the American Cancer Society, "none". Because Abbie was under 18, we weren't able to stay in Hope Lodge (paid for by your American Cancer Society Relay For Life dollars). We were also told by the American Cancer Society that their services catered to breast and prostate cancer because they get funding for those and they cater also to the "older patient". They realize that there are no services for youth and they will be "working on that." Flashback to early 2007 when my Aunt Arlene was diagnosed with lung cancer and was totally uninsured. Of course, I referred her to the American Cancer Society because I KNEW they would be able to help. Do you want to know what help she received? A list of websites she could check out to see if she was eligible through OTHER (NOT American Cancer Society) programs for assistance. There was nothing else the American Cancer Society could do to help. Oh, wait, they did offer a rickety old broken wheelchair. They also offered a couple other pieces of medical equipment, but with the shape the wheelchair was in, I would be afraid to use anything else received from them! So, we decided to give them ONE more chance...we were told no help for Aunt Arlene (age 66 at time of diagnosis, so she fit the American Cancer Society profile of 'older adult'). No help for Abbie because she was a 'youth'. Ok, so, giving the benefit of the doubt, one more chance....Dawn, my sister, was diagnosed with Stage 1 diffuse large B cell lymphoma (non-Hodgkins). She has 2 young children at home and is a single mom who has had to quit her job to endure at least 4 1/2 months of treatment. Because her long term disability is $56 too much per month, she can't receive any medical benefits from her employer or Ohio Medicaid. So, after one round of chemotherapy, with 5 more to go, she is told she has NO INSURANCE! So, one more try to the American Cancer Society. When we called them and explained the situation and asked what type of assistance the American Cancer Society could provide, we were told, "You can call the Patient Advocate Organization and see what assistance they can provide." I asked if they were affiliated with the American Cancer Society and was told they were NOT. I asked if there was any assistance the American Cancer Society could provide and was politely told there was nothing they could offer. However, their call center is open 24/7, seven days a week if we ever wanted to call back...I am not sure what we would call back for????? So, next time you decide to support a Relay fundraiser, think about it....what services has your loved one received from the American Cancer Society during their journey? Of all places we thought we could receive support, The American Cancer Society was it...WOW! We were shocked to find out how very WRONG that is!!! This year, all our efforts are in support of Abbie's fight and her HERO status as as SURVIVOR. Six rounds of chemo...ONE MILLION DOLLARS American Cancer Society assistance...Two hundred dollars in gas cards to keep us quiet (this is not typically given) Remission...PRICELESS!!!!

The Great!

I've personally experienced the results of this organization in...

what they DO NOT provide!

Ways to make it better...

If I had to make changes to this organization, I would...

be true to my word and provide services for ALL cancer patients and not just give referrals. Would lift any age restriction and any restriction that a particular cancer has to be diagnosed before help can be given.

More feedback

What I've enjoyed the most about my experience with this nonprofit is...

watching the survivor lap, which has NOTHING to do with ACS itself

The kinds of staff and volunteers that I met were...

in it for the beer and socialization.

If this organization had 10 million bucks, it could...

buy lots and lots of beer for their volunteers and staff during 'training' sessions.

Ways to make it better...

they were true to their word and provided SERVICES.

In my opinion, the biggest challenges facing this organization are...

the fact that people are beginning to find out what type of organization they REALLY are.

One thing I'd also say is that...

staff is hired on a 'who you know' basis. If you will 'sleep' with anyone, you can work your way to the top, right, Pam?

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009

MY ROLE:
Volunteer & Relay For Life team captain, caregiver, Board Member, Steering committee Member, Recruitment committee, $10,000+ team for five years.