You have most likely heard of Livestrong, and could even be wearing the famed yellow bracelet as you read this post. But many people don’t realize the core mission of the amazing organization started by Lance Armstrong, or the many ways to get involved. Livestrong not only works to put an end to cancer, they also provide assistance to ANYONE who thinks they may have cancer and work with you every step of the way, from early detection to final-stage treatments. Brooke McMillan, the ‘Online Community Evangelist’ for the organization spoke with me about the programs they have that are tailored for just about every issue that arises around cancer.
L+W- What is the core mission?
BM- Our mission overall is to inspire and empower people affected by cancer. We do that through programs such as educational efforts, advocating on Capital Hill for folks affected by cancer, teaching people how to advocate for themselves and providing one-on-one support for people and families affected by cancer. You can call us at anytime to talk to a professional if you have questions about how to seek the proper medical help, how to receive support in your area and any other questions you may have for yourself or a loved one affected by cancer. We help people who are having problems with insurance as well, which is a huge part of our program and one that I encourage people to take advantage of. We don’t want anyone to not get an exam or the treatment they need because they are afraid they can’t afford it. We can help in that area.
L+W- How can people find resources available to them locally?
BM- First, we help anyone over the phone locate places in their community that can offer them support. They just have to call the number on our website and we will do a search for them as well as help them each step of the way. Secondly, we are in the process of opening a new patient navigation center here in Austin, TX to walk people through the resources available to them locally, and we hope to replicate that program in different cities moving forward. We also advocate for more funding for cancer research and support and treatment on a national level and we work for smoke-free initiatives by state and by city, which will help on many local community levels.
L+W- Do you have any international programs in place?
BM- Our global initiatives just recently launched. We are working with organizations to get cancer drugs to where they are needed in developing countries. Right now the infrastructure is not set up in developing countries so people are getting diagnosed very late. As a result, a panic sets in with those diagnosed and their family members because they automatically think they are going to die. We are working to break that stigma and also help people get diagnosed earlier so they can see that there is hope.
L+W- What are some ways people can get detected early?
L+W- I noticed you have special programs in place for African Americans and American Indians. Can you talk about those?
L+W- What is the most moving moment you’ve had working with Livestrong?
L+W- Is there anything else people need to know about Livestrong?
Heidi Floyd is a breast cancer survivor who went through her cancer treatments while pregnant with her son. She now works full time for the Vera Bradley Foundation, which is focused on donating money to breast cancer research. Her story is, to say the very least, INSPIRING. We hope every woman and man reads this post and visits Heidi’s blog to become more empowered about the realities and advancements of treating breast cancer.
Love+Water- Can you talk about how you got involved with the Vera Bradley Foundation?
Heidi Floyd- The company, Vera Bradley, which started as a handbag and luggage company and now has other products, was started by two friends who lost someone close to them to breast cancer. They promised themselves that when their company became successful they would start a foundation to give money specifically to breast cancer research. They have already donated ten million dollars, and are getting ready to donate another ten million. My mother had died from breast cancer along with many other women in my family. In my interview with the company to work in the sales department as the IT person, I learned that they had this foundation, which was what made me want to work for them.
L+W- When did you find out you had breast cancer?
HF- Two years later I was diagnosed with breast cancer myself, and I was pregnant at the time. The first oncologist didn’t know how to treat me. I got a second opinion at the Indianapolis University Simon Cancer Center, which is where the Vera Bradley research money goes. I met with a clinician there and he knew what to do. He had treated 24 pregnant women that year.
L+W- What was the treatment process like?
HF- I could do chemo therapy once I was out of my first tri-mester, but no radiation and I couldn’t take the kind of pain killers or medicine that is normally given to settle your stomach. They took the baby by C-section a month before he was due in order to make sure that he came out without a problem, and that I was in the clear as well. He was in intensive care for a while because his immune system was compromised due to the chemo, but it didn’t take him long to recover. He is five now, and he’s very healthy.
L+W- Did you have to continue with your treatments after your son was born?
HF- I had several surgeries after that, and I’m doing fine now. I currently take a low dose of chemo everyday, but I have clean margins. After I completed my treatment I transitioned to working just for the foundation, which has been a very fulfilling job. I’m able to talk to women everyday and let them know that I believe there is hope out there for finding a cure, because we are seeing more and more evidence of that.
L+W- What do you think people who want to donate to finding a cure for breast cancer need to know about where to donate?
HF- I think the important thing is that many people want to give money to support this research but don’t always know where their money is going. So it’s important to know there are foundations like Vera Bradley where you know exactly where the money goes. Donations go directly to research- no question about it. There are many foundations that display the pink ribbon, but don’t always donate all of that money to areas you necessarily want to support. It’s important to look into what areas of breast cancer you are donating to and choose the area you most want to support.
L+W- What is the most moving moment you’ve had so far with the Vera Bradley Foundation?
HF- When I speak to groups I’ve heard a couple of times from women that they had wished they heard me speak sooner, because they have a friend or relative that died because they couldn’t find an oncologist who could treat them while pregnant. This is very moving because I can’t stress enough how important it is to choose a doctor you can trust. It’s very important to get second, third, fourth opinions until you find the doctor who is right for you, and that’s not just for breast cancer, but for everything. It’s so important.
Chris Hefling realized the need for people whose lives have been touched by cancer to connect with each other in a simple, easy way. So he created MyHopeSpace.com, an online community that allows anyone who has knowledge of or an experience with cancer to talk with each other. Read on to see how effective MyHopeSpace.com has been so far, and they’re just getting started!
MyHopeSpace.com is owned and operated by Foundations of Hope, Inc. a Nebraska not-for-profit company.
That is such an amazing resource- who can join?
Can you talk about some of the progress you’ve seen occur as a result of people connecting through My Hope Space?
What is the most moving moment you’ve had so far with My Hope Space?
Everyone handles a cancer diagnosis of themselves or a loved one differently – MyHopeSpace.com is designed to cross boundaries of all those impacted by the disease. Whether your male or female, have breast or lung or one of the other hundreds of types of cancer, are a patient or a caregiver or family member or member of the medical community, whether you live in the Midwest, Europe or are just one of the thousands in a hospital bed currently battling the disease – there is a place for you at MyHopeSpace.com to hopefully gain insight, hope, share you journey or just learn that you are not alone.
Talk to a board certified oncologist online
Join the Facebook Fan Page
Mike Moroz watched a young friend lose her battle with breast cancer because of a lack of awareness of the risks involved with the disease. He decided he needed to do something about that, so he wrote a film about her journey with the disease, called “Face The Sun.” He plans to donate 65% of the revenue from the film to cancer organizations. The more traffic he gets on his site, the more investors will hopefully invest to get the movie made. So visit the “Face The Sun” site right now, and then come back and read the moving interview I had with a very passionate and talented writer.
Love and Water- Talk about how you came to write the screenplay, “Face The Sun.”
Mike Moroz- A number of years ago a very close childhood friend of my wife was told when she was 29 that she had something on her breast that could lead to breast cancer, but to not worry about it because she was too young to get breast cancer and to come back when she was 40 for a mammogram. We lost Diane six years later at age 35 to breast cancer. I needed a way to respond to that. It was horrible that there was such lack of awareness for young women about the risks of breast cancer and I wanted to do something about that. So I wrote a screenplay about Diane’s story to illustrate the dangers of not being aware of the risks breast cancer can hold, and to celebrate her courage throughout her battle.
L&W- That’s such a wonderful tribute to her, and such a great example for other women to follow. Where are you in the process of making the film?
MM- We are in the process of getting full financial backing for it. We recently lost a large sum of the financial backing that would have allowed us to start shooting already, so we are working on getting that back in place. We have a cast and director, and are finished with most of the preproduction. Our plan is to donate a large portion of the revenue of the film to cancer organizations. I’m an actor and this is the first script I’ve written, but have written several scripts since then, two of which have been turned into films. I currently teach acting and filmmaking at a high school on Vancouver Island. I’m so excited to make this film in order to start giving back to those organizations that are working so hard to help people and families battling cancer.
L&W- What is the most important message you want to convey through the film?
MM- One is that what we’re trying to do is to generate some significant awareness for young people in particular, and people in general, about the need to be their own best health advocate. We know our bodies, and if something doesn’t feel right it is important that we advocate for ourselves. It’s important to get second and third opinions in order to give ourselves the service we deserve. Also, there is a real strength that is present in families that battle cancer. The journey is an astonishing one that gives a new perspective to daily life as a result. There is a need to celebrate that, which I know the film can help give to people as well. And of course there are the many grassroots cancer organizations that are working very hard every day to make alliances with cancer patients and their families a little bit easier, and they are often grossly underfunded. So we want to help them by donating a 65% of the revenue from “Face The Sun.”
L&W- That is such an amazing incentive for investors, I would think, since you are not out to make a profit on it yourself.
MM- It’s very true- the whole purpose of the film is to raise awareness and money that we can give back to help create more solid organizations that can offer resources for all cancer patients to take advantage of.
L&W- Is there anything else you want people to know about “Face The Sun?’
MM- I think it’s important for people to pay attention to how they are feeling, how their bodies are doing. I invite everyone to visit us on our website. The more traffic we have on our site the more potential investors will see the growing interest in the film, which is extremely helpful in perking their interest in funding it. When they a large audience in place, it makes them realize that the film will do well once it is made and out on the circuit, and that is what we want them to realize. 65% of the revenue will be going toward causes that support cancer, so we’re extremely excited to get the word out and build our audience now.
Alex Scott was a four year old cancer patient who decided to set up a lemonade stand to raise money for the doctors who had helped her. Her parents thought she would make $10.00- she made $2,000.00 in one day. The rest is a story that is not only inspiring, humbling and profound, but completely, unequivocally extraordinary.
Love and Water- Can you explain how Alex’s Lemonade Stand started?
Jay Scott- Alex’s Lemonade Stand Foundation was started by my daughter, who was a childhood cancer patient, when she was four years old. She had been getting some experimental treatments that really helped her, so she thought that if she set up a lemonade stand she could help the doctors by giving them the money she made to help other kids who were sick like her. She first asked us about having a lemonade stand after she had been in the hospital for a month getting a stem cell transplant. When she first got out it was winter and we were living in Connecticut, so we said she should wait until it got warmer. She kept asking about it, and finally my wife asked her what she wanted to buy with the money, because we wanted to just buy it for her. When she said she wanted to give it to the doctors, we thought that was really cute, so we let her set it up. We thought she would make about $10.00. Word got out about it, and people came from all over the area, and she ended up raising $2,000.00 in one day. It was great, she was happy, we delivered the check to the hospital and basically forgot about it. We then moved to Philadelphia in order to be closer to the hospital she needed to be near for her treatments. When we got there Alex said she wanted to set up her lemonade stand again. We said it would be really hard because we didn’t know anyone in the area. She insisted, so we made her wait until the Fall when she was in school because we thought we would know some people by then. We told her that she probably wouldn’t raise as much as she did the first time, so as not to get her hopes up. We gave her some fliers to give to the kids at school, hoping that would help get the word out for her. When the time came, it was cold out and she raised around $800.00. She wasn’t happy, and told us it was our fault for making her wait until it was cold outside and nobody wanted lemonade. So when it got warm out, we let her set another one up, sent fliers home with the kids again, and somehow the word got out to the newspaper here in Philly. She ended up making around $12,000.00 that day.
L&W- How did you have enough lemonade for that?
JS- We had to keep running out. It was my job to keep the lemonade stocked and take out the garbage, my wife’s job was to mix it up for her, and Alex served it with her friends. She had a great time, and we brought that money to the hospital. Again we thought it was a one-time thing. But the next year she was ready to set up another one. And we were thinking there was no way she could beat $12,000.00- we were concerned that she would be disappointed again. But we let her set it up, and in the pouring rain she raised $18,000.00 in one day. Our yard was trashed, our rugs were ruined because so many people came inside our house, but Alex has a great time. My wife had called the police earlier that day to let them know there might be a traffic jam around our area because our daughter was having a lemonade stand. They thought she was a little crazy, but when the day ended they called her back and said if Alex ever has a lemonade stand again to let them know because it caused a major traffic jam.
L&W- What happened from there?
JS- After that day an amazing thing started to happen. The word got out to people outside of Philly and people started having their own lemonade stands and sending Alex letters with money saying they had raised more money for her cause, hoping it would help. Letters started coming from all over the country, and eventually all over the world. She got letters that would say “Lemonade Girl, United States” on the envelope, with no address, and the post office would deliver them to us. That was 2003, and with the help of other people that year she raised around $100,000.00. All this time she was still fighting her cancer. She had some good times and some bad times, and when one treatment stopped working she moved on to another. The longest she was on a treatment was a year and a half. By the end of 2003, she wasn’t doing very well health-wise. The cancer had spread as high as her neck and as low as her foot, and was starting to invade some vital organs, like her liver. So we certainly were not going to bring up the lemonade stand again. But then we found out she was still planning to set one up that year in spite of her condition.
L&W- How did you find that out?
JS- We would get calls from reporters wanting to interview her, and even though she was only eight at the time she was pretty grown up. So we would always tell her who was on the phone and let her do the interviews. It was usually newpapers, but one day a magazine called, I believe it was Family Circle, and Alex took the interview. My wife heard her tell the woman that last year her goal was $100,000.00 and she made that, so this year she was going to raise a million dollars. When she hung up the phone, my wife said to her that she shouldn’t tell people she is going to raise a million dollars, because it’s very unlikely that she will raise that much. Alex said that there were a lot of things we had told her she couldn’t do and she did them, and that she believed that if other people helped her that she knew she could raise a million dollars. That was the first time that we realized we needed to help her, because we knew she didn’t have much time. So many people had written to see what more they could do to help throughout the year, so we decided to have at least one person in every state set up a lemonade stand the same day Alex was going to set up hers. We called it Lemonade Day. So in 2004, we had the first lemonade day. We had to move ours to the school because of the traffic issue, and there was a stand in every state and a lot of other countries. A couple of days before that day she went on the Today Show for the second time, and she had done a taping on Oprah and the CBS Morning Show, all of which aired the same day. At the end of the day, with the help of all the lemonade stands around the world, she raised $700,000.00. We got a call from Volvo, one of her sponsors- because even though she would set up stands in our yard she had sponsors. They asked how she was doing, and we said her health wasn’t good at that point. They asked if she had raised the million dollars, and when we told them she raised $700,000.00, they said to tell her that they were going to take her over the million dollar mark be doing a fundraiser in all of their dealerships. We told her, and she clapped twice and set and even higher goal for the next year. She died a couple of weeks later, knowing that she had reached her million dollar goal.
L&W- What happened from there?
JS- After she died we thought the lemonade stand concept would go away. We usually got hundreds of emails a day when she was alive from people wanting to help, and when she died we ended up getting twice as many, saying that we had to keep the lemonade stand alive. So in January of 2005, the Alex’s Lemonade Stand Foundation was born.
L&W- Can you talk about how the foundation works today?
JS- Lemonade stands are still a huge part of who we are and always will be. The percentage of funds from lemonade stands alone has gone down over the years, but the funds raised per lemonade stand has gone up. There are around 20,000 lemonade stands around the world, which makes up around 40% of our funding. But people do other kinds of fundraisers now as well. Some people run marathons, we have a Lemon Ball every year, and we have a lot of corporate sponsors. So many great people in the world who are so giving and involved with giving back have helped us and continue to help us raise money to find a cure for childhood cancer.
L&W- So Alex had a kind of cancer called Neuroblastoma, correct?
JS- Yes, it usually occurs in infants one and under. She was diagnosed a day before her first birthday. It attacks your sympathetic nervous system, so it usually starts around the spine. Hers started in her adrenal glands. It can be very aggressive. Unfortunately hers didn’t respond to therapy right away, like we had hoped. She lived with it for seven and a half years, which is much longer than kids usually live with it.
L&W- Why do you think she was able to live so long?
JS- She was a fighter, and her tumors seemed to become active in stages, where they would be active and then slow down for a period of time. We could never get rid of it all, so it would continue to grow.
L&W- What is the most moving moment you’ve had with Alex’s Lemonade Stand?
JS- Alex spent a lot of time in the hospital- an amazing amount of time. She always had problems with her platelets, where she would bleed a lot. I was responsible for taking her to the emergency room in the middle of the night because my wife was on duty during the day with the kids. I was taking her to the emergency room at around 2:00 or 3:00 in the morning, because she had a severe bloody nose. I said to her, “Alex, I’m so sorry you have to go through this.” And she said to me, “I’m happy for the things I have, I’m not unhappy for the things I don’t have.” I thought that was a pretty profound thing for a seven year old to say when she’s going to the hospital in the middle of the night. It was so profound that I actually called my wife to tell her what she said to me. It made me appreciate everything I have. When I’m having a bad day, I just think about that.
L&W- Is there anything else you want people to know about the foundation?
JS- One is that childhood cancer kills more kind in the United Stated than any other disease. So it is a big problem, because even the kids who survive have long-term side effects, including learning disabilities or loss of limbs, eyes, kindneys, among others. And this is all because of the treatments. So we need to find better treatments for these kids. I also like to tell people about some of the things we do as a foundation. We try to attack childhood cancer from multiple angles- we try to help the families, since it is so difficult financially. We help them in any way they need, including a travel fund. We also give to research projects for preliminary research. The government won’t fund research unless there is proven research already in place, so we give doctors that seed money to begin their research and to then get government funding. And finally, anyone can make a difference. It doesn’t matter how much you have, there is always something to give.
L&W- I noticed you state that on your website, and it is very similar to the concept of Love and Water, in that every little bit counts. I think it’s so important that people are reminded that a very small donation does make a serious impact in the grand scheme of things.
JS- Yes, it’s definitely true. Just to give you an idea of how that works in real numbers, the average lemonade stand raises around $400.00. But when we add up all of the stands from around the world, it adds up to tens of millions of dollars. So every little contribution makes a bigger difference than people realize. We take every donation to heart, as I’m sure to people making the donations do as well.
L&W- Thank you so much for sharing Alex’s story.
JS- It was my pleasure. Thank you.
Want to start the year off feeling amazing? Become a Spirit Jumper!!! Meaghan Edelstein survived cervical cancer and founded Spirit Jump as a result of her journey to recovery. I was able to talk with her about her finding new meaning in her life from becoming a lawyer to helping hundreds of cancer patients. And she’s just getting started…
Love and Water- How did you come up with the idea for Spirit Jump?
Meaghan Edelstein- I was diagnosed with 3B cervical cancer in February of 2007. I thought I was going to die, and was going through major treatments. One of my first feelings wasn’t fear of dying; it was that I was going to be forgotten and left behind. I started getting some cards, and I remember distinctly thinking that it was great but it was going to wear off in a month. I was a novelty, the sick person, and my friends and family were going to forget about me soon. But nobody forgot. I don’t know that one day went by where I didn’t get something- a gift or a card or a visit. It was really amazing, and it got to the point where that was the one thing I looked forward to every day. I survived against all odds, and I started looking at what happened to me and how I could find a reason in it to do something positive. I wasn’t looking to start a non-profit, I just wanted to doing something helpful. So I started a blog called “I Kicked Cancer’s Ass.” I blogged about cervical cancer, because I couldn’t find anyone around my age with such an advanced case when I was going through my treatments, so I didn’t have anyone to reach out to about their experience. I blogged everyday and used the words “cervical cancer” in every post so that people could find me if they Googled “cervical cancer.” And I created a community as a result. I started realizing that everyone felt as lonely as I did, but that not everyone was lucky enough to receive the amount of cards and gifts that I did. It occurred to me that people would really appreciate those. So I started Spirit Jump as a blog, in order to connect people. And it snowballed from there.
L&W- So when did Spirit Jump become a non-profit?
ME- Well I finished law school and passed the bar, and then I had my rib and kidney taken out this past March. While I was recovering I was receiving so many requests from people that it occurred to me that I needed to make Spirit Jump a non-profit. This is why I got cancer, in order to bring these people together. So we are currently in the process of making that happen.
L&W- And anyone can become a Spirit Jumper, right?
ME- Yes, it’s really interesting the way it worked out, because I didn’t start as a non-profit. So the great thing about Spirit Jump is that it can run without a budget. The way it works is that anyone can sign up to become a Spirit Jumper, and when we get requests from patients that they need a jump, we send our Jumpers those requests, and they can send cards and small gifts. I have a small staff- myself, my friend Dominique and my boyfriend Bryan. And none of us gets paid. We’re working to get funding in the year 2010, but the great thing is that even if we didn’t Spirit Jump could still run. My main focus is the people battling cancer, so it will always be my priority to help them directly. That is what sets us apart from other organizations- our directly helping each patient who reaches out to us.
L&W- What is one of the most moving experiences you’ve had so far with Spirit Jump?
ME- This woman was in the hospital while her husband was getting Chemo, and she saw our article in Cure Magazine while she was in the waiting room. And when the doctor came out he said that her husband’s chemo wasn’t working and that it was time to call in hospice. So she signed her husband up for Spirit Jump. And even though he only had a little bit of time left, she would see him looking out the window everyday. When she asked him what he was looking at, he said he was looking for the mailman. And she asked why he wanted the mailman, and he said he was waiting for his Spirit Jumps. That’s how I felt when I was in his position. People wonder why, when you may only have a few weeks left to live, you would be interested in such a little thing. You’re still a human being, and you can still look forward to getting a card in the mail. The little things become so important.
L&W- So the Jumpers can send anything?
ME- Yes, in fact you can see pictures of what people have sent on our site. People have put their talents to use and made gifts that are wonderful, or bought little things that really brighten a person’s day. We did an interview on CBS with a little boy with cancer named CJ. He had received a lot of gifts big and small, and when he was asked which gift he liked the most he said it was a homemade card he received from another little boy. And he explained that it was so special to him because he couldn’t go to school and play with other kids, and it was a way for him to have a relationship with another child. So it never has to be a big gift in order for it to touch a person very deeply.
L&W- How many followers do you have now?
ME- We have over 1000 followers, and we welcome anyone who wants to sign up. I just want people to understand that it is that easy. When you become a Spirit Jumper, you can send as many cards as you want. You can send one card or you can send one hundred, it’s entirely up to you. It’s a great first charity for kids because they can get credit for volunteering through Spirit Jump. And coming up in April, we are doing Cards for Cancer Day, where we will have people all over the world delivering cards to different cancer centers. So there are a lot of great ways that kids and families can get involved.
L&W- That’s really great, I am so deeply touched by this cause and am THRILLED to become a Spirit Jumper.
ME- Me too!
Become a Spirit Jumper here! http://www.spiritjump.org/
Follow Spirit Jump on Twitter here: @spiritjump