Communicate the “Who, What, and Why,” at All Stages of Your Journey: 5 Tips With Harvey Gaffen

“Open, honest communication has helped us find and secure resources, publicize the compelling stories of the people we serve, showcase our accomplishments, and attract new donors.”
I had the pleasure of interviewing Harvey Gaffen, president emeritus of the Les Turner ALS Foundation, and retired CPA. The Les Turner ALS Foundation serves the vast majority of people with ALS in the Chicagoland area and is the local leader in ALS research, patient care, and education. In its 40-year history, the Les Turner ALS Foundation has raised $67 million.

Thank you so much for doing this with us! What is your backstory?

In 1976, my brother-in-law and best friend Les Turner was diagnosed with ALS at age 36. There was little known about the disease, and no resources available to patients and families. Physicians didn’t even have a brochure to share with us. We were devastated but determined to raise funds so that people with ALS (PALS) and families would have support and hope for a cure that Les did not have.

My wife Bonny and I gathered with friends and family to brainstorm how we could make a difference. We formed the Les Turner ALS Foundation and began fundraising and securing publicity. Les passed away in April of 1978. We were highly motivated to ensure the Foundation’s success, and in
September of that year, we hosted the inaugural Mammoth Music & Record Mart, a sale of items such as LPs, 8-tracks, instruments, and sheet music. We attracted Dick Clark as the Chairman of Music Mart, and after raising $50,000, we established the country’s first ALS research laboratory, the Les Turner ALS Research Laboratory at Northwestern Medicine.

I was elected president of the Les Turner ALS Foundation Board of Directors, a volunteer post I held from 1979 until 2014. Today I serve as the Foundation’s President Emeritus and a member of the board of directors and executive committee. Bonny also serves on the Board of Directors and volunteers at Foundation events.

My role with the Les Turner ALS Foundation had a profound effect on the person I am today. It has taught me the values of good health, family, friendships and the many rewards of helping others. I am humbled by the significant difference the Foundation has made in the lives of ALS patients and families. The thought that one day the foundation will make a difference to mankind is truly beyond my comprehension.

Can you tell me about the most interesting projects you are working on now?

We are working on several interesting projects in the areas of research and patient care, and one that comes to mind is a collaboration on Answer ALS. The Les Turner ALS Research and Patient Center at Northwestern Medicine is the newest member of this global effort. The mission of Answer ALS is to build
the most comprehensive clinical, genetic, molecular, and biochemical assessment of ALS, and make the data and research tools freely available to researchers to help bring an end to this disease.

So tell me a bit more about your organization?

The Les Turner ALS Foundation was officially launched in 1977 and soon became one of the nation’s first and largest independent ALS organizations. The foundation’s most meaningful accomplishments included the establishment of the nation’s first ALS research laboratory at Northwestern Medicine in 1979, the creation of support programs to help PALS and their families, and in 1986 the establishment of the Lois Insolia ALS Clinic, a multidisciplinary patient center at Northwestern Medicine. In 1992, the Les Turner ALS Foundation became a founding member of the International Alliance of ALS/MND Associations. Also, the foundation supports the Les Turner ALS Research and Patient Center at Northwestern Medicine, bringing together all ALS research and a multidisciplinary patient clinic under one umbrella.

Can you tell me a story about a person that you helped?

One person who comes to mind is a man named Daryl. In the early 90’s, during a card game, Daryl’s sister noticed he wasn’t able to shuffle cards as well as he used. For nearly two decades, Daryl and his family searched for answers. He was continuously misdiagnosed. A few years ago, Daryl was seen by the team at the Lois Insolia ALS Clinic at Northwestern Medicine and given an MRI. Finally, he was provided with an answer — he had ALS. He was immediately connected with the Les Turner ALS Foundation to begin receiving support. Imagine not knowing the cause of your symptoms for 20 years and finally connecting with people who understand your disease and how to best treat it. I’m grateful the foundation exists for Daryl and the thousands of other people we have served.

This obviously is not easy work. What drives you?

I am 100 percent driven by the courageous people living with ALS.
ALS is a rapidly progressive disease that causes muscle weakness, difficulty speaking and swallowing, and generally, complete paralysis. In most cases, while the body continues to deteriorate, the mind remains unaffected. While some symptoms are treatable, there is no known prevention or cure for ALS.
I have met countless PALS and found that despite the challenges of this disease, so many people appear determined to live each day to the fullest. It may be that when faced with the idea of death we become more appreciative of the little things, more attuned to what really matters.

For example, years ago Monte Briner, his wife and friends dedicated their time, talents, and resources to raising funds for ALS research. Monte was completely paralyzed, communicated using eye-gaze technology, and was dependent on a ventilator, yet he led this group in planning a wildly successful annual fundraiser. By the time he lost his battle to ALS in 1998, he’d helped raise $900,000 for the cause. I’m also driven by the healthcare professionals who work with ALS patients, including researchers, clinicians, social workers, geneticists, and many more. They are in the trenches, searching for answers, treating people on a physical and emotional level, and trying to make daily life a little more manageable.

None of us are able to achieve success without some help along the way. Is there a particular person you are grateful for who helped get you to where you are?

I am most grateful to my wife of 56 years, Bonny. She has enabled me to carve out a significant part of my life for the Foundation, and supported me throughout every growth phase of the Foundation. She has always been there to encourage me to continue the commitment I made to Les Turner to improve the lives of ALS patients and families, until the cause of and cure for ALS can be found. Together we will never give up the fight.

What are your “5 things I wish someone told me when I first started,” and why?

  1. Think big and think long term. Forty years ago we had no idea how successful we could become and no idea how to reach a level where we could make the kind of impact we’re making today. Initially, our sole focus was to raise funds for research, and we achieved that rather quickly. Today, the Les Turner ALS Foundation allocates more than 50 percent of revenue to patient services and education, two areas we didn’t consider when starting the Foundation.
  2. Fundraising is the lifeblood of all that we can accomplish.
    We are primarily a fundraising organization; our fundraising success directly translates into the impact we make in the ALS community. For example, in 2016, we raised approximately $2.5 million and were able to support: 1,489 visits at the Lois Insolia ALS Clinic; 1,708 home visits by our patient and family advocates; engagement with 487 support group participants; 68 grants and 25 educational events. Without fundraising there is little we could accomplish.
  3. Volunteer support is critical. In the beginning, we were fortunate to attract wonderful volunteers, including friends, family and business associates, all of whom are largely responsible for the Foundation’s growth. We leveraged personal and professional relationships in near everything we did. For example, through business connections, we secured warehouse space and the event location for the Mammoth Music Mart, and we relied on 500 volunteers for the 11 day sale! Patients and their family members were eager to volunteer, as this was—and still is — a way to give back to the organization that helps them navigate through their ALS journey.
  4. Communicate where you’ve been, where you are currently, and where you’d like to go. My parents always stressed the importance of communication. With the foundation, we quickly learned that we must share our needs, accomplishments, patient stories, and all other news with a variety of audiences. Open, honest communication has helped us find and secure resources, publicize the compelling stories of the people we serve, showcase our accomplishments, and attract new donors.
  5. Think about a succession plan. We never considered that someday we’d need to pass the torch to other leaders; we were focused on the present needs. There likely were capable people who crossed our path who could have continued our work, but because succession was never on our minds, we failed to identify potential opportunities. When the time came for the executive director to retire, we conducted an extensive search and found an ideal woman to step into the role. I stepped down as board president, largely, because I recognized the value of change and the impact other leaders could make.

Is there a person in the world whom you would love to have a private breakfast or lunch with, and why?

Bill Gates. Notwithstanding his exceptional business success, he has chosen to devote a significant portion of his life to making the world a better place to live. I would love to better understand his motivation, and benefit from his coaching on successful philanthropic leadership. He is a shining example of both commitment to a cause and focus on making his dream a reality.

This was very inspiring. Thank you so much for joining us!

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