WANT TO START A FOUNDATION

When I was first dx in Sept, 2008, my children and I decided that we wanted to start a non profit foundation to help others with Lung Cancer. I have always been more of a giver than a receiver. We want to promote awareness, help with reseach money, and help people in financial need, or just to give them a wish they always wanted. We have lots of ideas, and have talked to many people about fundraisers. We just don't where to begin. We looked into 501 3 B and it seems so complicated. I have talked to an Acct he said ask a lawyer so I talked to a lawyer and he said talk to an acct. Now What? We live in South Florida.

If there is anyone out there who has done this or knows how to set up a non profit foundation, I would appreaciate any suggestions. We are trying to do this with as little investment as possible.

Thank you for any help you may give us.

Hugs and Prayers as always, we all must fight this monster together!!!!

Janet

Janet

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17 replies. Join the discussion

Sounds like a wonderful idea...I would suggest asking a local non-profit organization. Ask them how they got started? Where to go, what papers to file etc??? My first move would be an attorney. But maybe finding a corporate attorney???? Not sure on that though...But love the idea. Keep us posted...Hope this helps a little.

God Bless.

S

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I will look into this. I work for a large Non-profit agency. I cannot believe it would require attorney fees etc to set this up. And if it does require that there has got to be a local attorney or someone on this site who has been effected by lung cancer who could help pro bono.

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I've looked into it too. You have to have a board of 5 or so, I believe. I did some research on it, and it seemed like alot for me. Plus, I'm just one person. :-(

A dream I have is bringing a state chapter of the National Lung Cancer Partnership here to South Carolina. They are a wonderful organization, and their first chapter is in North Carolina. Here is the link for more info. I would HIGHLY recommend looking into it. They have been very helpful and supportive of me.

http://www.nationallungcancerpartnership.org/index.cfm?page=chapters

Keep me posted. ~Angie

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Just scanned the membership directory for the NLCP and found 11 members/advocates in Florida.
I could help put you in touch with them. Just let me know!

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Angie in SC

That would be great, I would appreciate any help you maybe able to give me.

Hugs.

Janet

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Hi Janet,

Like you I wanted to begin a non-profit for lung cancer education, support and awareness. We are still in the beginning stages, but I did find some fantastic resources.

We began with a simple form that was filed with the state to become a non-profit corporation and then made a phone call to the IRS to get an identification number. We were led to a state program that is run out of one of the county libraries that provided information on beginning a 503 (3) (c) and met with a great guy who reviewed the complex process with us. After I completed the forms as much as I could, we found an attorney though the Wellness Community, Lenny Komen, who met with us and went over our application line by line (pro bono).

We have yet to send it in because after some thought process we decided to change our name, but we are close and it is an on going and learning process. We also have been fortunate to get the support of a couple of the best oncologist here in St Louis.

It has been a great experience so far and for the first time since I was diagnosed in July of 2005, I feel like I have some control and am moving in a positive direction.

Hope you are successful in your worthy efforts.

Toby

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Dear Janet,

What a commendable plan you and your family have. I set up a foundation to honor my mom after her death last summer. This group did it all for me, they invest the money, administer the foundation etc. I just contact them when I want them to cut a check to a beneficiary. They are the :http://www.cfneg.org/

Best wishes.

Anita

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Janet --

I would contact the LUNGevity Foundation.

LUNGevity is focussed on raising money for Lung Cancer research, promoting early detection, and supporting people with the disease.

They can help you to start your own tribute program or your own events in Florida, without having to go through the hassle of creating a new non-profit organization and 501(c)(3).

LUNGevity is fantasitc organization fighting to help people with Lung Cancer and helping to find a cure. Its also one of the fastest growing charities in America.

http://www.lungevity.org/

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Do you really need a formal legal entity to start out with?

When I moved here, as a stranger in town, (6 years ago), I set out to creat lung cancer projects and awareness. I wrote articles for publication, joined health organizations. I wrote to the CEO's of local clinics. I found that local Oncologists eager to cooperate. That got the attention of other survivors. Today we have a very active program.

Our program is now sponsored by the major Clinic/Hospital in our area. We have a Lung Cancer Awareness Committee that meets monthly composed of the major lung cancer doctors, cancer administrators and executives, representatives of the Clinic's Foundation, LC survivors and caregivers.

Our efforts have led to establishing support groups. We held one major fund raiser, developed multiple (different time duration) documentaries on disks with doctors telling about lung cancer, and survivors making pitches for awareness and fund raising. The documentaries are for presentation on TV programs, and various group presentations. We have developed an attractive display, that manned by survivors, we tell our story and handing out literature at various health fairs and conventions. We have had two such shows, have three more scheduled to date. We have had a major education program of clinic doctors on lung cancer. We have a speaker program where a survivor and the head Oncology nurse are making presentations (with the appropriate documentary) to civic groups. We are considering an education program for Middle School and High School students (to discourage smoking and get our message into homes). We are planning a major radon detection program for our area. We have had a series of major articles in the local newspaper. Throughout the large hospital/clinic facilities, they posted attractive pictures of two of us surivors, further publicing lung cancer awareness.

At meeetings of legislative groups and health organizations we make regular reports, hammering away at increased awareness, the need for more research.

We are currently planning still other program for the next two years.

The message: You don't need to have a formal legal organization, you can use existing resources. One great resource are local lung cancer clinics. It is great PR for them! We feel we are making significant progress in creating lung cancer awareness and, we feel, will lead to increased funding for research.

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Ok, this is the reply probably no one wants to hear. When my husband was diagnosed, we immediately jumped into what I call the "default" organizations. Those that immediately come to mind when you think lung cancer. Then I found out that they were much more about tobacco control than helping diagnose early and treat lung cancer.

So we moved on to the next phase. Setting up our own. Struggled along being frustrated at not being able to do nearly as much as we wanted. I really looked into groups who were making big changes. This was not an easy decision to give up the group which my husband had devoted precious last hours to develop. However, I knew that he was all about doing what would accomplish the most for lung cancer more quickly - not establishing a legacy for himself.

About a year ago, I believe it was the Wall Street Journal did an extensive article on the current situation with a barrage of non-profits being established and the confusion they are causing in potential donors. Not only that, but it results in the fragmenting of potential resources ultimately harming the very goals which the organization was established to promote.

Key components I demanded were support for early detection (and not 5-10 years down the line. Let's use the technology currently available to detect and save lives NOW as we develop better technology) and obtaining funding for better treatment.

There was only one answer to that question - Lung Cancer Alliance. So I folded our group into LCA and am so happy I did. They are doing so much on very little resources. I know my husband would be very pleased with my decision.

LCA is actively developing state chapters. Contact Kay Cofrancesco (kcofrancesco@lungcanceralliance.org) and ask how you can get started.

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Just to share my thoughts, and not just plugging LCA...

There are several really great lung cancer organizations that already exist, and cover all of the goals that you mentioned wanting to cover (increasing awareness, funding research, providing financial support, etc.) Many have been named above.

I have unfortunately seen a lot of situations where organizations reinvent the wheel that other orgs have already put together, when sometimes the more effective way is to channel your resources into entities that already exist (you might as well! They've already done all of the grunt work!). We work very closely with many of the other lung cancer organizations and when there is a service that we as an organization do not provide, we are constantly referring people to the organizations that do (such as the resource list on the right-side of this page). We know that there are things that we do well, and there are things that other organizations do well.

My recommendation is to research organizations that already exist (such as the ones already mentioned, among others), find which one fits most closely to your vision, and talk to them about what you can do. Along with the information for Kay that Joyce mentioned above, I'm certain that our Development Director, Emily (eeyres@lungcanceralliance.org) would be happy to talk to anyone about how to raise money and what it could go towards.

Hope that helps.

Amy
LCA

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There are several answers to your question about forming a 501 (c) 3 -- tax exempt, tax deductible charitable organization. If you are in South Florida, you might want to consider setting up a donor advised fund at your local community foundation. This is fast and easy and low cost and you can get it going in no time. Contact me and I would be glad to tell you what I am doing in this regard. tecappiello@gmail.com

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I to started out wanting to start something. I now just support a few different organizations because it seems like allot of small organizations out there. I would like to see them join forces for a really big organization working together. We can do so much more together. Their is a great organization in San Francisco the Bonnie addario Lung Cancer Foundation, they are big, raise big money and they are doing this incredible thing called Alcumi. It is the first lung cancer tissue bank in the country , which is huge for all of us. So.......maybe joining forces would better serve the lung cancer community, you could be their Florida fundraiser/advocate. Just a thought and what I am doing..........www.thelungcancerfoundation.org

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I am so glad we are having this discussion. I have wanted to do something for so long since losing my mother in 2007, but I am just one person.

I agree so much with what Joceyn, Highland Guy and Amy of LCA have said.

Lung Cancer Alliance, the National Lung Cancer Partnership, Lungevity, the Bonnie D. Addario Lung Cancer Foundation, Joan's Legacy - Uniting Against Lung Cancer, the Joan Gaeta Lung Cancer Foundation, the Lung Cancer Research Foundation, the Beverly Fund, and the Lung Cancer Foundation of America are the most prominent ones that I have found so far.

Out of all of those, the National Lung Cancer Partnership is the only one that is actively looking for state chapters to be developed. They have one in North Carolina. My dream is to bring one here to South Carolina. I've started a group and cause on Facebook, fishing for other advocates to help me.

Highland Guy is so right in that we need to get our cancer centers in our areas involved. The National Lung Cancer Partnership is comprised of lung cancer physicians and researchers, as well, as patients and advocates. For more information on setting up a state chapter, go here: http://www.nationallungcancerpartnership.org/index.cfm

At one time, Lung Cancer Alliance had an area on the website for news from individual states detailing advocacy efforts. They do such good, I wish that there was an initiative to encourage state chapters. They do have groups in CA, Georgia, and Massachusetts, but MA is the only one that provides information on how to get involved in that area. Check out LCA-MA here: http://www.lungcanceralliance.org/massachusetts/index.html

LCA has wonderful resources available on the site, from fundraising, advocacy efforts at the local & national level, ways to celebrate November, to developing support groups.

Personally, I would love to see NLCP and LCA grow, and I know that they will. We just need to help.

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I so appreciate your commitment and desire to make a difference, but agree with Amy, Angie, et al. With such a shared frustration with American Cancer Society and American Lung Association, I always find myself wishing that Lung Cancer Alliance, Lung Cancer Partnership and others had the level of name recognition (and budget!) as the big two. I'd like to see those groups gain that strength without creating even more small groups that then compete for the same dollars.

That being said, I've seen that some of these groups do special events linked to the memory/honor of a particular person, so there may be ways that you can partner with them to give a special emphasis to some part of their program through fundraising or programming.

I don't think you have to abandon your wonderful idea, but perhaps use it in a way that strengthens our message through an already established group that shares your priorities (and you'd have no administrative nightmare! : ) ).

Thank you again for your willingness to make a significant difference for all of us!

--Stephanie

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I also am so glad to see this discussion. I agree that there are already so many wonderful groups promoting the lung cancer cause. I agree with Angie, Highland Guy, Steph, and others. I think each of us can do our fund raising as we are able and support a large group that already exists and is in agreement with our beliefs.
I would like to see more state and local chapters started up by those of us who are living this nightmare. I started to learn more about this last winter but put it on hold while I dealt with some health issues. I do meet with a few people locally for lunch and support. Now that I am feeling better I need to get back on track and see about doing something in a more official way.
Thanks for leading me in that direction.
Mary

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Just to clarify - Lung Cancer Alliance IS actively organizing state chapters. If you don't yet have a chapter in your state, it's not that hard to get one started and LCA will give you all the help you need to do it. They have a HUGE list of names from all over the country and can help you connect with others from your state.

If you want to talk to someone who has done it, contact me and I would be happy to share my experience.

Additionally, they have plenty of help for you if you want to organize a fundraiser - from the most simple to big events. They will walk you through it.

You're on the LCA sponsored board right now, so it's easy to get to LCA. Just click on the LCA logo next to Dave's picture at the top of the page.

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