So Livestrong funds no longer go to cancer research

[shootingstar]

http://www.outsideonline.com/outdoor-adventure/athletes/lance-armstrong/Its-Not-About-the-Lab-Rats.html?page=all

Yes, he was a great athlete (even though we're not sure if he doped). But seriously, in the cycling world there's alot of other cool guys who are ..just more modest and plug along helping their community along without much fanfare.

So it seems the Livestrong Foundation (or whatever) stops giving donor money to cancer research. More on awareness, read the rest. And still people think they are giving to cancer research.

Of course, there's the bigger issue of how much these large fundraising events do actually fund directly patient care and research vs. administrative costs of the fundraising organizations. Not an easy one and one that requires the donor to do their own digging around.

I know my sister, a physician, did use to inquire directly to the charities that she gave/fundraised, where the money went in terms of % of programs to care/treatment for the patients.

[ny biker]

Actually, if you look at their website, they have always been clear about where the money goes. Their priority is helping people who have cancer, during and after treatment. Not medical research. Lance said from the beginning that he started the foundation because he felt kind of lost after his treatment ended, like his life was completely changed and he still had lots of issues to deal with but he didn't know where to begin because his professional support system (doctors and nurses) were largely finished with their task.

There's no conspiracy.

[Reesha]

I am all for an organization that does more to help affected individuals directly than to line the pockets of biomedical company shareholders.

[Pax]

Actually, if you look at their website, they have always been clear about where the money goes. Their priority is helping people who have cancer, during and after treatment. Not medical research. Lance said from the beginning that he started the foundation because he felt kind of lost after his treatment ended, like his life was completely changed and he still had lots of issues to deal with but he didn't know where to begin because his professional support system (doctors and nurses) were largely finished with their task.

There's no conspiracy.

Absolutely agree.

My friend who is in the end stages of stage IV melanoma called them after she was first diagnosed. Our town doesn't have much in the way of melanoma care and Live Strong helped her find providers who could help. They worked as an information resource when no one else knew what to tell her.

[Skierchickie]

All I know is, a year ago, when my DH was waiting to have a section of his colon removed after a tumor caused his appendicitis, he contacted LAF. They put him in touch with the Navigate Cancer Foundation (I think they are partially funded by LAF, but not sure). Navigate Cancer was by far THE BEST resource we found. I tell anyone and everyone I talk to whose life has been touched by cancer. At a time when you are the most bewildered and have to make some very important decisions with no prior experience, and are just plain lost, Navigate Cancer is the most caring, helpful organization imaginable. The guidance we got from them was what kept us going. And it didn't cost us a penny. When we die, we may just leave everything to the Navigate Cancer Foundation.

Shameless plug, maybe. But without LAF we wouldn't have found this incredible resource. Research is critical, but to have somebody to help you wade through the maze is what you need when it happens to you.

[shootingstar]

I appreciate the cancer support services:

I have a father who has prostate cancer @83 yrs. who is worsening every year.

But it's doubtful his hospital, Princess Margeret Hospital in Toronto, which is Canada's oldest and top teaching cancer hospital in Canada was much of a beneficiary of LS since they were fundraising long before LS existed.

But more to the point would be value of I guess, of the Cancer Bike Rides led independent of LS for public awareness.

I just don't relate to the branding of LS to my father. I don't even relate much to the Cancer Bike Rides in all this.

Don't get mad at me. Our family has other complicated needs in terms of support that align more with linguistic specific services for the Chinese community.

[Reesha]

I'm sorry to hear about your father!

I lost my grandmother to alzheimer's and nobody in our family really relates much to the Alzheimer's Association. I think it's just a matter of personal choice and need. I am glad for the things that Livestrong Foundation does on behalf of those that choose to use their services!

[shootingstar]

Thx Reesha for the thought/observation.

I guess I relate to the Cancer Rides more for situations of strength, fun and I know it's for solidarity to be with others who have lost others to cancer or have cancer themselves.

But for myself, just cycling by myself and thinking about loved one without an organized ride of people "celebrating" life or whatever, is enough for me.

I gave some money to the Moustache national campaign for Prostate Cancer several months ago.

[MillieNZ]

Actually, if you look at their website, they have always been clear about where the money goes. Their priority is helping people who have cancer, during and after treatment. Not medical research. Lance said from the beginning that he started the foundation because he felt kind of lost after his treatment ended, like his life was completely changed and he still had lots of issues to deal with but he didn't know where to begin because his professional support system (doctors and nurses) were largely finished with their task.

There's no conspiracy.

I felt the same when I finished cancer treatment - anything that goes towards helping cancer patients through the issues of cancer, treatment and moving on afterwards as well as supporting the 'support' person gets my vote and money.

[margo49]

Cancer is an illness not a lifestyle!
That is my objection to the whole "survivorship" concept.

[OakLeaf]

Cancer is an illness not a lifestyle!
That is my objection to the whole "survivorship" concept.

Agree 100%. But it's an illness that "survivors" have to deal with for the rest of their lives, whether or not they're ever declared "cancer-free," and that's the kind of thing I understand LAF helps with. (Besides helping people navigate the system and maintain their lives while they have an active cancer, which is also an enormous challenge.)

There's where I wish there would be more "awareness." Making people who have never had cancer, aware of the everyday challenges of cancer "survivors." Making it okay for "survivors" to acknowledge those challenges.

[indysteel]

Here are a couple of links that might help people better understand what LAF/LIVESTRONG does:

http://www.livestrong.org/What-We-Do

http://www.livestrong.org/App_Themes/Livestrong/pdfs/NationalActionPlanOverview.pdf

[maillotpois]

I've been following a young woman's writings on the NY Times - about her diagnosis and struggle with treatment for leukemia. Today's installment details the process of trying to preserve her fertility in the face of the cancer treatment. Apparently, Livestrong has a scholarship program to help cover the costs (as much as $25,000) of fertility treatment for cancer patients.

http://well.blogs.nytimes.com/2012/04/19/life-interrupted-a-young-cancer-patient-faces-infertility/?hp

What a great program. Egg preservation, etc., isn't covered by insurance, and if you're a young person facing the thought of a loss of fertility as well as a struggle for your life, this is a tremendous resource.

[salsabike]

And I'm going to add one more Livestrong activity that's near and dear to my heart---their support for teenagers who are living with cancer and working to regain their strength and athleticism. There are not many programs like this for teens and I hugely appreciate the help and hope and achievement that it gives them. And if you want a good cause to donate to...

http://www.teenslivingwithcancer.org/duel-in-the-pool/

DUEL IN THE POOL

Lance Armstrong and Teens Living with Cancer Kick It!
Mary Eggers and Lance Armstrong will battle it out for 50 meters in the pool at the University of Buffalo using only a kickboard. All proceeds will benefit LIVESTRONG and Teens Living with Cancer (TLC) in Western New York (Rochester and Buffalo).
Attendance at the live event will be by Special Invitation only.
A video of the race results and behind-the-scenes footage will be revealed during Armstrong’s presentation at the University of Buffalo, Distinguished Speakers Series.
Saturday, April 28, 2012 @ 8 pm
University of Buffalo
Alumni Arena on the UB North (Amherst) Campus
Tickets are available for purchase through TicketMaster and the UB Alumni Arena Ticket Office.
How it All Happened
As fitness coach for the TLC Fit program and passionate champion of the TLC mission, Mary boldly challenged Lance Armstrong via Twitter to the “Duel in the Pool”. Reflecting his own passion as a cancer warrior, he accepted Mary’s challenge! The Duel was on!
In the spirit of community collaboration, a mutually beneficial partnership between the University of Buffalo, Roswell Park Cancer Institute and Melissa’s Living Legacy Teen Cancer Foundation was formed to make Armstrong’s appearance in Buffalo a triumph for all.
About Lance Armstrong
One of the most recognizable athletes of all time, seven-time Tour de France winner, cancer survivor and advocate. Founder of the Lance Armstrong Foundation: LIVESTRONG. For more information visit www.livestrong.org



About Mary Eggers
Mary Eggers, triathlete, Hawaii Ironman three-time qualifier, USAT All American, multi-sport coach, yoga instructor, registered nurse, mom and extraordinary human being.
For more information visit www.ironmomma.com


About Teens Living with Cancer
Teens Living with Cancer (TLC) is the peer support program of Melissa’s Living Legacy Teen Cancer Foundation. Our mission is to help teens live their best life through all stages of their disease and treatment. At TLC teens with cancer have a voice. A voice that is loud, strong and empowered. At TLC teens are not alone. Together they are living with cancer!
Our vision is closely aligned with Lance Armstrong’s who has used his experience and influence to help millions of survivors around the globe take control of their lives.
For more Information: info@teenslivingwithcancer.org or call (585) 563-6221

Donations
The goal for “Duel in the Pool” is $100K! Neither Lance Armstrong nor Mary Eggers is receiving any compensation for this event. All proceeds will be shared with LIVESTRONG and TLC to help in the fight against cancer.

[SadieKate]

Mary Eggers is one feisty woman! Finally sent off my money.

[salsabike]

Oh, please look at her latest blog post at ironmomma.com! What is happening here is making me cry with pride.

From ironmomma.com: What an opportunity we here at Teens Living With Cancer have been given. Two months ago we (and I use the term WE lightly, it’s Lauren and Leah and the teens, I am just a big-mouthed volunteer!) were not quite on the map. Now we are known all over the country and opening a second chapter at Roswell. It’s not because we’ve generated some huge donation or got totally funded….. because we didn’t…. we need your donations.
But because people took notice and took interest. This community has come together like nothing I have ever seen. Not just Buffalo and Rochester, we have community all over the country who realize and understand our message. Our biggest donor is located in Boston. Second biggest donor in Buffalo. Rochester….. we hope you will come around too, because this is in YOUR back yard. These are YOUR kids. Your students. The kids who check your groceries at Wegmans. The kids who hold the door for you at the bagel shop.
I have done nothing special except use what I have to bring the spotlight to Teens Living With Cancer. I got Mr. Armstrong…… because I asked. This isn’t about me and it isn’t about him. It’s about why.
This whole experience has been a gift. We are so grateful for the love and support of everyone.
While our kick off is a week away, we still have much to do.
DONATE HERE or please, SHARE!"

[salsabike]

Mary Eggers is one feisty woman! Finally sent off my money.

PS Thank you, SJane. :)

[szsz]

There's where I wish there would be more "awareness." Making people who have never had cancer, aware of the everyday challenges of cancer "survivors." Making it okay for "survivors" to acknowledge those challenges.

Thank you for verbalizing this.

While it is useful to consider myself a survivor (as opposed to victim) I don't feel like I'm living a lifestyle; nor do I feel completely truthful when I just say that I had a mastectomy (to avoid mentioning breast cancer.)

[redrhodie]

I am only just "getting" how my life has changed. I found myself freaking out last night over a lump on my arm that I'm pretty sure now is a bug bite. Man, the littlest thing can set me off.

[OakLeaf]

(((((red))))) Hope you find your equilibrium sooner than later.

[marni]

Thank you for verbalizing this.

While it is useful to consider myself a survivor (as opposed to victim) I don't feel like I'm living a lifestyle; nor do I feel completely truthful when I just say that I had a mastectomy (to avoid mentioning breast cancer.)

ditto to all this, and I also am at a loss to explain the follow up chemo therapy/endocrine therapy/tamoxifen which has definitely made a difference in my life and will continue to do so for the next four years or until I am definitely clear, but even then, the worry will remain.

Today I had a random grim thought that once I am done with the **** tamoxifen, the recurrence time is another five years so I have 10 years unless it comes back to the other breast, and then the clock starts again. What will happen after 10 years who knows? of course I could get hit by a bus tomorrow, but this kind of thought never used to trouble me.

I feel like a fraud for thinking about joining a support group since really, all things being bright and hopeful, it is all over for me, and aside from the ongoing reactions to tamoxifen, it really was no big thing but I still wish I had someone I could vent to with.

Red, as far as bug bites, yes they leave lumps and I know exactly what you went through. Continue to be vigilant but try not to be the paranoid (a thin line to tread I know).

[ny biker]

ditto to all this, and I also am at a loss to explain the follow up chemo therapy/endocrine therapy/tamoxifen which has definitely made a difference in my life and will continue to do so for the next four years or until I am definitely clear, but even then, the worry will remain.

Today I had a random grim thought that once I am done with the **** tamoxifen, the recurrence time is another five years so I have 10 years unless it comes back to the other breast, and then the clock starts again. What will happen after 10 years who knows? of course I could get hit by a bus tomorrow, but this kind of thought never used to trouble me.

I feel like a fraud for thinking about joining a support group since really, all things being bright and hopeful, it is all over for me, and aside from the ongoing reactions to tamoxifen, it really was no big thing but I still wish I had someone I could vent to with.

Red, as far as bug bites, yes they leave lumps and I know exactly what you went through. Continue to be vigilant but try not to be the paranoid (a thin line to tread I know).

I think it was a big thing. And in a support group, you might find you are able to help others as well as find a place to vent with others who have been through a similar experience.