Dean Crowe - Founder and CEO, The Rally Foundation for Childhood Cancer Research

PAC2 is pleased to present the fourth in the Childhood Cancer Advocacy: The Interview Series. Today we honored to chat with Dean Crowe, the Founder and CEO of the Rally Foundation for Childhood Cancer Research. Previously, we've talked with Jay Scott, Founder of Alex's Lemonade Stand Foundation, John Lehr, President and CEO of CureSearch, and Kathleen Ruddy, Executive Director of the St. Baldricks Foundation. Hope you enjoy the interview, and learn more about opportunities to participate with this great organization; The Rally Foundation for Childhood Cancer Research.
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1. You and your husband founded the Rally Foundation for Childhood Cancer Research. Rumor is you asked a question: “What can I do to help?” What is the rest of the story?

Well, the rumor is true. My son, Jonathan, was in high school when his friend and teammate, William, relapsed with a brain tumor. Several families in the community, including my own, came together to assist his family in any way we could, which included praying for them, cooking meals, cleaning the house and making sure the bills were paid. Once they were completely taken care of in this regard, we all felt the need to do more. However, we could not figure out what else we could do because there wasn’t a vehicle to do more at that time.

We continued to do all that we could until, one day, in William’s hospital room, I found the answer. As I watched William literally fighting for his life that day, I asked his mother, Nancy, “What can I do to help? I am not making you dinner. This situation is so far beyond dinner!” Nancy quickly replied, “Raise money for childhood cancer research.” Not intending to be rude, I responded that billions of dollars are raised for cancer research each year. Nancy went on to explain that there is a severe lack of funding for childhood cancer. I didn’t even know kids got different cancers than adults. Nancy couldn’t tell me the difference, so I said I would research it.

I asked if she wanted me to raise money for brain tumors. She said, “No, all childhood cancers. Every family on this floor needs better treatment options.” Then, I asked her if she wanted me to fund research at the hospital where William was being treated. Nancy said that there was great research being done all over the country, so she wanted me to fund it all over, including the hospital where William was being treated.

In less than five minutes, Nancy and I had developed Rally’s mission, what we would fund and where we would fund it. The mission was simple. Raise money for all types of childhood cancer research across the country. One child diagnosed with cancer is one too many, so we would work to make a difference in the lives of these children and the generations that followed. I left and researched the differences in adult and childhood cancers and the reasons behind this lack of funding. From that point on, I knew something more had to be done.

2. Would you describe Rally’s mission and what the funds raised are used for?

Rally Foundation is a 501(c)(3) non-profit organization that empowers volunteers across the country to raise awareness and funds for childhood cancer research to find better treatments with fewer long-term side effects and, ultimately, cures.

Our mission is really two-fold. First, we provide ways for grassroots supporters to get involved. Once our Rally families are prayed for, have meals on the table and have their bills paid, we tell them to send us the friends that keep asking, “What can do I do to help?” We have ways for them to help! The friends can raise money specifically for the type of cancer their friend’s child is fighting.

The second part of our mission is to take the money raised and support research for all types of childhood cancers, from science at the bench to phase II clinical trials, fellowships and survivorship studies.

3. Rally offers many ways for its supporters to participate. Would you describe some of the programs?

There are several ways to be involved with Rally. We have three main programs.

a. The Rally Athlete program is made up of two parts. First are the Rally Athlete Training Teams. Beginning to advanced runners can participate in one of these Teamsfor various half and full marathons across the country. As a Rally Athlete, you have the opportunity to receive professional coaching and fundraise in honor of a specific Rally Kid, a child who is currently fighting or has fought childhood cancer. Rally Athlete Training Teams have gone to Disney, Seattle Rock N’ Roll, ING and Marine Corps marathons. Some teams are big, over a 100 participants, and some are small, with just six participants. We are recruiting for Disney right now. The Rally Athlete program also consists of Rally Athlete Special Events. Often times, family members or supporters of a child fighting cancer will approach Rally about doing a 5K race or a bike ride in honor of the child. Under this part of the program, Rally works with these individuals to create a plan for their event, while helping them empower other supporters in their communities to assist in making their vision a reality.

b. Our second program is Rally 4 Quarters 4 Research. This simple change collection fundraiser is organized by grassroots supporters and is done in local schools, businesses, churches and community groups. The program provides a fun, simple way for individuals and organizations to get involved in the cause, while also simultaneously gaining valuable team-building skills. In just four years, more than 300 events have taken place across the country to raise more than $200,000 for the childhood cancer research!

c. The third program we offer at Rally is what we call Rally for Research, which aims to provide grassroots supporters of childhood cancer families an avenue to host their events in honor of a child fighting cancer. These events range from concerts to golf tournaments to birthday bashes to auctions and are all community driven. Often, people do not quite understand all that goes into planning a fundraising event, so we work with them to create a plan for their event and brainstorm ways to make it successful in the community. We thank the donors and provide the tax letters. Additionally, we let the organizers help choose what hospital the proceeds will fund. They are able to have direct input as to where the money they raise is directed and know that the researchers are being kept accountable through Rally’s Post Award Agreement.

Really, all of these programs help individuals that were like me in the sense that they want to do more but can’t figure out how exactly to go about it. We help them find their answer and determine which option works best for them.

4. We see such energy from so many parents in the childhood cancer community; moms and dads and other family members that want to make a lasting difference and honor their child. We also see some re-creating of the wheel. At Rally, you’ve had incredible results from such individuals who essentially planned, created, grew and developed an entire new chapter of Rally, complete with direct input on where any money they raise is directed. Can you give an example of this?

I can think of so many great examples, and a few in particular come to mind. One is Kathi, who is spearheading the Rally NW Team in Seattle, Wa. After Kathi’s niece lost her battle with cancer, she decided to get involved and make a difference. Since then, Kathi has recruited more than 80 of her friends and family to raise money through the Rally Seattle Rock ‘N Roll Training Team and other special events. From her work, Kathi has been able to raise over $70,000 to be given to Seattle Children’s Hospital through a Rally-funded research grant. She has started Rally Girls, a group of women that run together, that does something to support families fighting cancer once a month. Last month, they provided dinner to the Ronald McDonald House.

Another great example is Elaine, who is spearheading Rally Nashville efforts. Elaine’s son was diagnosed with cancer (Ewing’s Sarcoma) several years ago, and thankfully, he is now doing great! He has been done with treatment for a few years, and Elaine finally felt like she had caught her breath. A few months back, she approached Rally about doing something to raise awareness and funds for research. She knows that research saved James’ life. Since then, Elaine has rallied her community to get involved. Rally Mania, consisting of a charity concert and golf tournament, will take place this fall in Nashville. Eddie Money and daughter Jesse will be performing, with special guest appearances from Brooks & Dunn’s Kix Brooks, Steve Cropper, Jars of Clay, Ashley Cleveland with daughter Lily Greenberg, Jordan Pruitt, Gordon Kennedy, Andrew Charbonnet, Felix Cavaliere and Ed Cash. In addition, she has recruited eight schools to participate in our Rally 4 Quarters 4 Research program and is planning a Benefit Bash in Nashville for the spring. Elaine will work with Rally to determine where the funds raised from her Rally events will go. We have already funded a $20,000 neuroblastoma grant at VCH. I am confident Elaine will raise well over $100,000 just with the Rally Mania Concert, and it will be exciting to see what research we will fund. Maybe we will fund a pediatric cancer fellow. Who knows? Elaine will have huge input into what we fund.

In addition to Kathi and Elaine, we have many incredible volunteers across the country, including Pennsylvania (PFF!), Virginia and North Carolina. Personally, I wish there had been an organization like Rally around when I asked Nancy what I can do to help because I don’t think people realize all of the work that goes into starting and maintaining a 501(c)(3) foundation. I know I didn’t! There is an enormous amount of rules and laws that often end up exhausting people who truly just want to help. I believe there is strength in collaboration and appreciate individuals like Kathi and Elaine who have come to Rally with an idea and trust Rally enough to partnered with us to make it happen.

At Rally, we make sure to have fun in everything we do. If you are thinking about starting an event, call us, and we would love to help talk through it and make it happen. Just know, we won’t do it for you because we understand the need to “do something!”

5. Rally has established wonderful relationships with many local corporations. But Dean, we want the scoop on the athletes! I know Brian McCann, the MVP of the Major League Baseball All-Star game, is a huge supporter. Can you share more on your professional athlete and corporate sponsors?

We really and truly have been blessed with great corporate sponsors and professional athletes as spokespeople. Mizuno has played a key role connecting Rally with some great athletes. They introduced us to Brian and Ashley McCann who are absolutely amazing and have a huge heart for Rally and the cause. They are far more than just spokespeople. They are a part of the Rally family. They truly care about the kids and the research that is being done. They also do a ton for these kids behind the scenes that no one else knows about. They come from great families and are two of the most genuine people I know. I knew they were special, but the night they drove an hour to come to Rally Kid Alexa’s viewing and stood two hours in line to hug Alexa’s mom and dad, I knew then that they were truly MVP All-Stars from the inside out.

We are also thrilled that Curtis Lofton, starting linebacker for the Atlanta Falcons, has joined Rally. Curtis saw his high school basketball coach’s young daughter battle cancer, so he knows firsthand what a family goes through when they face the disease. As a result, he is incredibly invested in the cause. He can relate to my experience of “wanting to do something!” Curtis genuinely wants to make a difference in the research and in the lives of these kids. It is ironic because he is this tough football player that is one of the leading tacklers in the NFL, but he is so compassionate and caring when it comes to the Rally Kids. We have a great relationship. One of the first things we did with Curtis was a Fashion Funds the Cure show. Getting him fitted was taking a long time, and being the mom of boys (one the same age as Curtis), I knew he had to be getting frustrated. So, I stood outside his dressing room and said, “Curtis, put your clothes on. We are moving on.” He came out laughing and said, “I feel like I am with LeeAnn Touie. You and me, Dean, we are ‘The Blind Side Atlanta’.” I cracked up, but there is some truth in it. He has an incredible story, and when he shared it with me, I was even more amazed at his heart to help kids with cancer. He is not only a spokesperson but a friend. Just yesterday, we were talking, and I told him that one of our Rally Kids was in the hospital and not doing well. You could tell it just hurt him. He got really quiet and said, “I’m praying for her. You let me know if I can do anything.”

In addition to the McCanns and Curtis, former NFL Super Bowl coach Sam Wyche is on our advisory board. He is a great, fun guy that has a strong business side and gives great advice. He is always willing to help. In addition, I will be forever thankful to Tom Glavine who helped Rally get started, even before we had the name Rally! I learned a lot from Tom, things that still influence Rally every day. Furthermore, former Atlanta Falcons lineman Todd Weiner still helps out. He is a gentle giant who cares deeply for our Rally Kids.

As I mentioned, we feel so blessed to have these professional athletes involved with Rally. They are all invested in our organization and the cause and enjoy it enough to invite their friends, including other professional athletes, to participate. We appreciate each of them for the work they do for Rally and for using their positions to help raise awareness and funds for childhood cancer research.

6. Would you tell us more about the Rally Fantasy Baseball Tour? What have you seen in these trips to major league parks that encourages you? Are there plans to repeat?

The Rally Fantasy Baseball Tour was created when Greg, who had lost a friend to childhood cancer, approached us with the idea of taking our Rally Kids to ballgames. Greg’s close friend Doug, who is one of the producers for “Jimmy Kimmel Live!”, also jumped on board to help us make the tour a reality. Ultimately, we were able to visit five cities this summer (Atlanta, Seattle, Tampa, Los Angeles and Cleveland). In each city, Mizuno helped connect us with one of their athletes. We then invited families in these cities to attend a MLB game with us and meet the player. Rally was also able to tour the local children’s hospitals and labs where we are funding research. It was very special for us to be able to visit these hospitals with some of the families and meet the researchers who are doing so much positive work for the cause. We are very thankful for Jimmy Kimmel Live!,  Bud Light and EA Games who all sponsored the tour and made the experience possible for the kids.

What really encouraged me while we were at the major league parks was the way the players acted. Having been around professional athletes through our Rally events, I have learned so much more about how these athletes are being pulled in so many different directions to help out several great causes. It was inspiring to me that these Mizuno players took the time to meet the kids and sign autographs, and they genuinely seemed to enjoy it.

You asked about plans to repeat. Well, that is a great question. We actually have a call next week to talk about that very thing, so I will keep you posted! The sponsors are key to doing again. Anyone want to be a sponsor?!

7. Rally has operated for 4 years now. What changes within the childhood cancer world have you seen in that time?

During this time, I have seen Rally funded research making good progress, which is very exciting. Our hope is that in just a few more years, this research will be part of some of the major breakthroughs in childhood cancer.

I also sense that there has begun to be a progression towards organizations working together to fight childhood cancer. As I mentioned before, I have see strength in this type of collaboration. PAC2 does a good job pulling the childhood cancer together. Thank you!

8. What efforts has Rally made in working with other childhood cancer organizations?

Four years ago, when Rally was making its first round of grants, it hit our Board that doctors were forced to fill out several different applications for the same research grant and that each childhood cancer organization had its own medical advisory board to review the grants. We felt like this was multiplying the work for the researchers and doctors who serve on multiple advisory boards. In an effort to streamline the application and review process, we reached out to the Hope Street Kids Foundation and co-funded some research projects with them. Since then, we have co-funded research with ­Alex’s Lemonade Stand Foundation, Pediatric Cancer Foundation out of Florida, Bear Necessities Foundation, Leukemia and Lymphoma Society, National Foundation for Cancer Research and others, as well.

We do make our “own” grants, but we really like co-funding research to streamline the process for the doctors, so they can actually do research. Currently, Rally and two other organizations are looking to join together our scientific advisory boards and grant processes to streamline the process even further. Since we all want the same thing, we should work together!

9. What do you believe the biggest challenges are that we face in increasing awareness and funding? How can we best overcome these challenges?

Are you sure you want me to answer this? I’ll be honest. I believe, in the childhood cancer world, we have a tendency to be our own worst enemy. Often, the message is so personal to us that we share too much information with the general public and overwhelm them. I really think we need to simplify our message. Take breast cancer as an example. There are seven main types of breast cancer and multiple subtypes, but you only hear people raising awareness and money for breast cancer. You don’t hear all the different technical names of breast cancer. It’s just breast cancer. If we could create this type of unified message in the childhood cancer world, I believe we would be much more effective in raising awareness and funding.

We also need to stop saying that childhood cancer is rare. Rare is a relative term. To me, if something is rare, it doesn’t happen very often. Childhood cancer is the number one disease killer of kids. Today, 46 families found out that their child has cancer. Kids die every day from cancer. Rare? I think not. I heard a Rally mom giving a talk and she mentioned how mad it makes her every time someone says it is rare. I couldn’t agree more! Did you know that about the same numbers of kids are diagnosed with juvenile diabetes as kids are with cancer? Yet, I don’t hear how rare juvenile diabetes is, but I sure do hear how rare it is for kids to have cancer—ugh! We need to quit saying it is rare. It is a huge problem!

In addition to this, it would be great if there was a symbol that was uniquely associated to childhood cancer. For example, when you see a puzzle piece, you think autism. At Rally, we use a red exclamation mark. It has become a well-recognized symbol for our organization, and supporters are always asking for things with the exclamation mark on it. If we could use this symbol or another unique one to separate us from the standard ribbon, I think it would greatly increase awareness and benefit our cause as a whole.

10. In your efforts, who or what has had the most positive impact on you, and what has caused the most frustration?

Wow, that is hard question because so many people have had a positive impact on me and Rally. I can’t single out just one. Let me see. At the top is my husband, Reid, who is incredibly supportive. Then, I would have to say Kathleen Ruddy at St. Baldrick’s. The day Rally got its 501(c)(3), I called Kathleen. I’d never met her, but her name came up on a Google Search. St. Baldrick’s had just become its own 501(c)(3), but Kathleen had years of experience with non-profits and childhood cancer, in particular. She provided wonderful guidance and shared valuable information. Since then, she has become a very good friend and trusted advisor. Also, the Rally Kids and their families have all made a positive impact on me. Watching what they endure and the spirit in which they endure it, you cannot help but be positively impacted and inspired to Rally On! Also, our grassroots supporters have had a positive impact on me, especially when I can tell it is someone like me who so desperately wants to “do something” but doesn’t know what to do. Seeing the joy on their face when their event is successful, when they cross the marathon finish line wearing their Rally Athlete shirt or when they bring in their check for their Rally 4 Quarters 4 Research change collection makes me smile and breath a huge sigh of gratitude that there is a vehicle for these people to do more!

As far as frustration goes, I think of two things. Number one, without a doubt, is seeing the devastating side-effects kids are suffering due to the treatment they received and going to kids’ funerals. I mentioned the other in the previous question. At times, the childhood cancer community seems fragmented. We all want to see a world without childhood cancer, so if we could just come together in our fight, we would be able to accomplish so much more.


11. Where do you see Rally in two years? 10 years?

That is a good question. From April 1, 2010 to the end of July, Rally has grown 60 percent. We just got back our independent audit, and we are operating at 93 percent efficiency. Also, we are just now starting our strategic plan and are solidifying our goals. In the next two years, we’d like to see the Rally Athlete and Rally 4 Quarters 4 Research programs grow. We’d like cancer families to know that they don’t have to start their own foundations because they can operate under Rally and have a lot of say in how and where the funds they raise go. I also see Rally in other states continuing to grow.


In 10 years, I would love to see Rally having been a leader in pulling the childhood cancer community together and spearheading one voice so that cancer families and the grassroots supporters are able to bridge the gap in the lack of funding for childhood cancers. Truthfully, I would like to see Rally have sustainability and a life beyond me so that it is still making an impact on the research, the childhood cancer families and all of the people who want to help.


12. Outside of our readers working directly with Rally (which we highly recommend), what two specific suggestions would you make for us all to become more effective advocates for childhood cancer?



I would first recommend for each reader to know how to share their story in a concise way that leads people to want to help. At Rally, one of our mantras is “Keep It Simple Sweetie.” We use this principle when we share our own stories for why we are involved. Your story should inspire people to help, not overwhelming them with medical terms and stats. If they want to know more, trust me, they will ask!


Second, I would strive for all readers to be unifiers, not dividers. We have to be respectful that people have passions for all the different types of childhood cancer and aspects including research, advocacy and family services. However, we must recognize that it will take all of these parts working collectively to make a difference.


It was once said “So powerful is the light of unity that it can illuminate the whole earth.” We all need to fight together in order to make a difference in the world of childhood cancer. One child suffering from cancer, no matter the type, is one child too many. The fact that childhood cancer is the number one disease killer of kids and that childhood cancer research is so severely underfunded is mindboggling. Keep it simple sweetie and together we will make a difference. Rally On!



Dean, thank you for your thoughts and words, your passion is truly evident. But especially thank you so much for all you and Rally do for the kids each day. Rally On!!!


(PS - that's sorta funny, people always say keep it simple, stupid, to me...)

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Wow, Dean! Well said. I am so proud that Sean is a Rally Kid and that you are out there fighting for our kids. Thank you for all you do.
Love,
Mary Beth
Dean,
Thank you, so much.

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