Kathleen Ruddy is the Executive Director of the St. Baldricks Foundation. 
Obviously, she directs the executives there, and has worked to successfully increase St. Baldrick's revenue to the point where St. Baldrick's is THE largest contributor to childhood cancer research outside of the US Government.  

Direct away Kathleen!

If you are not familiar with St. Baldrick's, volunteers shave their heads in solidarity with kids fighting cancer and family and friends donate generously to raise funds for childhood cancer research. In 2010 St. Baldrick's has raised $20 million and shaved nearly 37,000 heads, including 3,700 women.

With more than 20 years of professional non-profit fundraising, marketing and public relations experience, Kathleen began working on St. Baldrick’s in early 2001. The daughter of two cancer survivors, Kathleen believes in paying it forward, and enjoys managing and serving as a board member for the foundation. She answered the call to “be brave, get bald” herself, as a shavee in 2005 – the year the St. Baldrick’s Foundation held its first events as an independent charity.

Kathleen chose a life of service at the age of 14. On her first day as a hospital volunteer, she tried to comfort a four year old patient who was inconsolable and crying for his mother. She remembers wondering how the nurses could care for all their young patients so lovingly without getting choked up themselves. That night Kathleen told her mother she didn’t have it in her to fulfill her childhood dream of becoming a pediatrician or obstetrician, but she would find another way to help. At the time, she couldn’t have imagined St. Baldrick’s, but believes God has the best plans for us all.

Our mission is one: Cure Childhood Cancer.

The idea and growth of St. Baldrick’s is definitely unique.  Would you please share your founder’s story and the early history of St. Baldricks?  

Observing that the three had enjoyed much professional success, Tim Kenny challenged his friends, John Bender and Enda McDonnell to find a way to “give back.”  Enda’s hair style at the time was the inspiration for the shaving which John tied to childhood cancer as kids typically lose their hair during treatment.

As members of the tight-knit reinsurance industry, they all attended an annual St. Patrick’s Day party at Jim Brady’s in Lower Manhattan – a favorite gathering place for reinsurers in New York.  Not being professional event planners, the three decided to “co-opt” the party and turn St. Patrick’s Day into St. Baldrick’s Day.  

I’m personally not aware of another industry where competitors are also your partners and clients as they are in reinsurance.  Reinsurers insure insurance companies and share the risk between the companies, so the people you beat out on a deal today, you may bring in on the same deal tomorrow.  The unique nature of this industry provided the ideal incubator for St. Baldrick’s in the early years.  As a non-profit organization, one is expected to manage a charitable business and deliver valuable services with far fewer resources than a comparable for profit entity.  The strategy of taping one industry’s network to “promote” the cause on behalf of the charity was the first key to St. Baldrick’s success.  The rise of the internet, and online giving allowed St. Baldrick’s to create one of the first “social” experiences online, and now these, together with social marketing drove the expansion of St. Baldrick’s to schools, other professions and geographic regions.

Initially, when St. Baldrick’s began, it was “housed” under the umbrella of another charity, but in 2004, it became imperative to form an independent foundation.   Among other things, it was apparent that a year-round focus would support greater growth, allow consistent messaging and outreach strategies, and keep the cause in the public eye year-round.

St. Baldrick’s has raised nearly $20 million already in 2010, all to fund childhood cancer research.  After having met both you and Tim Kenny, we were so inspired by your commitment to professionally managing St. Baldricks like a business; while never forgetting the true hero’s we are all fighting for.   What are the primary factors in St. Baldricks’ successfully becoming the largest private charity in the world for childhood cancer research?  

In the past 20 years there have been far too many organizations – both corporate and charitable – that have been poorly managed or where the public trust has been abused.  As a 501(c)(3) charity, we enjoy certain benefits – a gift from the American people if you will.  For example, in exchange for not paying taxes on our revenue, we agree to govern our organization by certain standards, and when our  board was first assembled, they immediately vowed to meet or exceed all IRS and charity rating standards, and I’m happy to say we do.  At the same time, we adopted guiding principles that shape every decision and action we make at every level of the organization:  effectiveness, efficiency, transparency, a pioneering spirit (both in terms of how we raise funds, and the type of research we use the funds for) and a sense of fun.  

At the same time, we struggle to compete with charities that don’t have the same commitment to transparency, and take advantage of IRS standards that allow non-profits to report the nature of expenditures inconsistently.  Further, there’s been much written in the last few years about widespread concern in the non-profit sector that well-intentioned but misguided donor expectations that non –profits can do more with less, or for less, than their corporate counterparts has actually created what Stanford University study recently called a “non-profit starvation cycle” where charities are less focused on achieving mission-related outcomes than maintaining an expense ratio that may not be sustainable or healthy for the organization’s long-term ability to fulfill the mission.

The St. Baldrick’s Foundation is no different and while we’ve done very well  in this regard, and are always looking to do better, I’m always astonished when supporters would rather talk about what it costs to find a cure rather than actual progress towards finding it.

When President Kennedy challenged America to put a man on the moon by the end of the 1960’s, he didn’t say, “but only if we stay within a certain budget.”  The goal was to expand human knowledge, extend man’s exploration, and advance science.  We have no less ambitious a mission, but it’s more precious as our children’s lives depend upon it and with them, our future.  

Yet, we bargain, as if spending a nickel more to save kids lives isn’t worth it.  The focus needs to be on outcomes, and our philosophy has never been to be a permanent fixture on the landscape – we want to solve this problem so resources can be freed up to tackle the next generation’s greatest challenge.  We definitely feel the urgency to be successful, and make the best decisions at every level of the organization so a true cure will be available sooner rather than later.

I think our loyal supporters recognize we’re not into fluff, but substance, and we have a solid track record of delivery.
   
Thank you for sharing the results from the January 2010 St. Baldrick’s Research Summit.  We think you nailed some key focus areas.  We do note an expansion in the areas of research; into survivorship and supportive care.   Since we believe that St. Baldricks has historically focused on research into treatments; please tell us why these new areas are so important.  

The short answer is, these areas have been traditionally underfunded, because until quite recently, there weren’t many survivors, and medical teams were so desperate to help kids survive, that the quality of life during and after treatment were less dire priorities than helping the child to live.

The longer answer is, parents tell us all the time “a cure is not enough!”  Now that there are more survivors of childhood cancers, we’re seeing secondary cancers, caused by the original treatment that saved their lives the first time around.  Other survivors aren’t able to enjoy the fullness of life – they have cognitive, vision and hearing impairment, heart conditions, stunted growth, or they’re often infertile.  We may have saved their life, but we shortchanged it.   

Most of the research being done today to improve the quality of life during treatment, boils down to making treatment less violent and painful which is vital, but children want to be at home – they don’t want to live inside a hospital.  So making treatments that work with a home-based lifestyle will benefit the child and the entire family in many ways .

While PAC2 was in the dreaming stage, we saw thousands of foundations associated with childhood cancer.   There wasn’t and isn’t a lack of fundraising organizations!  Frankly, we almost saw the problem as the opposite; too many. 

Yet the childhood cancer research world continues to be woefully underfunded!  Now, in creating a foundation, you face IRS requirements, somehow determining which research is best as well as devoting the time and energy required to actually start-up and run it!  Yet there are other choices.  We do have a question, would you tell us how a parent can work with St. Baldricks, honor a child’s memory, potentially direct funding and let you guys do all the behind-the-scenes drudgery?


We recognize this challenge too  and it’s a natural consequence of loving parents  who want to honor their child’s memory or give meaning to their childhood cancer journey and help future patients.   At the founding of the St. Baldrick’s Foundation, we considered seriously, whether creating another organization was the right thing to do.  In our case it was because our previous umbrella organization didn’t have the means to nurture a program that had outgrown the parent.

Many people volunteer for charities, but don’t anticipate the programmatic, fiscal, and governance demands of managing a non-profit.  So when starting one, they’re often in for a rude awakening – spending so much time on administration when they wanted to raise awareness and funds for a cause. 

Researching existing organizations can help avoid duplicating expenses and overhead.
With the St. Baldrick’s Foundation, presently families may tell their child’s story online, and allow our shavees to honor their child when they shave, and we’re always looking for families to serve as spokespeople at events and in the media.   We invite the PAC2 audience to stay tuned for other opportunities for families to honor their children.

We think that achieving awareness outside of the childhood cancer community is a vital step to the success of overall future funding efforts.  Obviously, holding a shaving event achieves this goal. What other ways does St. Baldricks reach outside of the childhood cancer community to increase awareness?

The St. Baldrick’s Foundation’s mission is to fund research, and up until now we’ve done that almost exclusively with head shaving events.  Our shavees are the key to our organization – through them, we meet the donors who fund the research.  We’re working on ways to invite the donors to continue their support, whether or not the shavee participates more than once, and achieving this will raise greater awareness for the cause and help each donor understand why pediatric research is so vital and different from the many worthy efforts that focus on adult cancers.

The massive amount of media exposure our events generate is raising awareness among the general public, and of course, we are working on other ways of expanding awareness, both to our own donors and the general public.

St. Baldricks has become the largest private fundraising organization in the world specifically for investments into childhood cancer research.   Can you give us your view from 30,000 feet on the state of the childhood cancer advocacy/funding raising world and what changes you have seen in the past several years?

When the St. Baldrick’s Foundation was established, the board decided not to include advocacy in our mission since many organizations already were concentrating in this area and it isn’t our area of expertise so what I can offer is really just a personal observation.

We’ve witnessed more advocacy activity in recent years, but my understanding is most federal dollars are roughly distributed based upon the percentage of patients with each type of disease.  By this recipe kids will always lose since there are fewer kids with cancer than adults.  If the NCI would factor in the potential average years of life saved when distributing research dollars, it seems greater progress would be made as more funds would be available for new ideas.  

Also, on the advocacy front, it seems that no matter what is authorized by Congress, the important thing is that the funds are actually appropriated, and we need more childhood cancer champions in the right positions of power to accomplish that.

In relation to fundraising, we are pleased to see our fundraising – and that of others – increase every year, and hope that trend will continue to grow, but we recognize much more will be needed to drive a cure.

You know that PAC2 is a huge proponent of working collaboratively.  Last month Jay Scott of Alex’s Lemonade Stand shared his thoughts on C3; Childhood Cancer Charities Unite.  What are St. Baldrick’s plans for participating in C3U?

We’re a member of C3U and are always interested in ways to collaborate.  Many organizations have come to us seeking to collaborate, but have really just meant for St. Baldrick’s to fund their operation.  For reasons we’ve already touched upon, we won’t do this, so C3U is a refreshing approach.  Many ideas have been discussed and over time, C3U will further refine the unique role it wishes to play in the childhood cancer community and we’re eager to support that in any way we can.

What do you see as the biggest challenges we face in increasing awareness and funding?

The St. Baldrick’s Foundation took a simple concept, grew it responsibly by tapping grassroots enthusiasm for the cause, and put the money raised into the hands of the best researchers.  In the process, we’ve garnered tremendous media and public attention for the cause, and by extension, have helped significantly to raise awareness of childhood cancer issues.

By not copying other organization’s programs, we built a unique one to help childhood cancer stand out among the myriad worthy causes available to support today.  Now, because we’ve been successful, a number of organizations are copying St. Baldrick’s, and not all of them are dedicated to pediatric cancer.  This is likely to cause an erosion in support for childhood cancer research overall as one organization will become indistinguishable from another and childhood cancer will again be crowded out by larger organizations focused on older patients.

Where do you see St. Baldricks in 2 years and in 10 years?

Our board will be creating a new strategic plan next year, so I expect the plan will be well underway in two years, and whatever specific strategies we employ, you can bet they’ll be grassroots oriented, and based upon our guiding principles.  

I cannot speak for our entire board, but I will always push for the “big hairy audacious goals.”  In 10 years, I personally want St. Baldrick’s to be raising $50 million a year through diversified funding mechanisms to drive progress in the following areas:

  • Raising the overall cure rate from the present 85% to over 95%;
  • Effectively doubling the cure rates of the most stubborn pediatric cancers – neuroblastoma and brain tumors;
  • Dramatically improve the quality of life for pediatric cancer patients while in treatment;
  • Dramatically improving the survival rates of older childhood cancer patients who all too frequently today are treated on adult protocols, hence decreasing their survival rate;
  • Dramatically diminishing the life-long side effects of today’s childhood cancer treatments, such as cognitive, vision and hearing impairment, stunted growth, heart problems and infertility.

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

The first St. Baldrick’s event was held on St. Patrick’s Day, and now, ten years later, we have over 500 events each March. But we’re working to hold events year-round, because children get cancer and need treatment all year long.  So my first suggestion is to raise awareness of the needs of cancer’s youngest patients all year.

I’ve never met a person who didn’t want to help children with cancer once they knew of their needs.  But most people don’t understand they can be part of the team that finds a true cure, or at least they don’t know how.  If you have an idea, make it easy for people to become a part of it.  Issue a call to action.  Be ready with a detailed list of your needs, and always ask for money!

Kathleen, and Jane and St. Baldrick's, we can't thank you enough for all you do for the kids, and for participating in this interview series.  We wish you continued success.

And Kathleen, please...keep directing away...to the moon...


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Thank you so, so much Kathleen!

Your responses further confirmed my respect for St. Baldrick's and made me all the more proud to be participating with team 46 Mommas Shave for the Brave this year.

Thanks again for keeping the focus on the critical research that will be most beneficial to the children.

-Amy B.
mom of ^^Arden^^ (NBIV, forever 3), Grayson (3 1/2) and Zoey (6 months)
Awesome! THANK YOU for all that you do for our cancer warriors.

How do I sign up to be one of the 46 Mommmas for next year? I will shave it all for my son, Luke, who survived stage 4 Embryonal Rhabdomyosarcoma. He was diagnosed at age 3 and is now 4.5. We are LOVING the off treatment life and continue to pray for clear scans. Next set on June 11th.

Please contact me and let me know how I can register for next year's event.

THANK YOU! Please keep fighting.

Best,
Monica Marcelis Fochtman, Ph.D.
Mom to Luke, age 4.5 and Connor, 2
monicamfochtman@yahoo.com
Monica,

If you'd like to join us (46 Mommas) this year (for the Sept. 13, 2010 event), you can certainly do so! We welcome more Mommas to join us and help us reach our goal! Please find Tiffany Beamer on here and send her a message (click on her name to get to her PAC2 profile page). She can take you through the process and provide you with up to date details.

All best,

Amy

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