Bev Heim-Myers is the CEO of a multi-million-dollar organization.  That organization is also a rare disease advocacy group — the Huntington Society of Canada. Their head office in Kitchener Ontario has over a dozen staff and they also have 25 professional social workers spread out across the country to assist families.

They also have 40 local volunteer-run chapters across Canada that meet regularly and do a variety of fundraising activities throughout the year.

The organization provides over $1 million in research funds and well over $1 million in family support programs. A quick look at their website will show that they are a well organized, professionally managed advocacy group that is a leader in Huntington disease support and research.

And they make it all look easy.

Open communications

Recently, we talked with Ms. Heim-Myer about the organization and asked her to provide any advice to other groups wanting to expand their impact on the patient community.

Bev Heim Myers“I get many calls for other charities asking me ‘what are you doing and how do you do it?’,” said Heim-Myers, adding, “I think that any CEO of a medium-sized not-for-profit is usually happy to talk to others and give them some coaching.”

Heim-Myers noted that a good organization has to have a website that is open and forthright for people to understand what the group is doing and how they are doing it.

“Donors today are very savvy. And more and more we are seeing targeted funding. So, if a donor gives us money they want it targeted to a specific research project or something else. Generally, people do not want to donate to charities and having any money go to turning on the lights or administrative work,” noted Heim-Myers, adding, “That is a challenge.”

Heim-Myers, continued, “We need good people to run the programs. So it is a delicate balancing act to make sure we have enough operational dollars to be successful in our outcomes and end Huntington disease. We have an incredible staff that are amazing.”

“And if you think about it, they are working to make their jobs obsolete. They are working to end Huntington disease. And as long as you make people aware that some funding needs to go to administrative costs and you are open about it, people understand that.”

“If you are wondering about the charity and where the money is going, just pick up the phone and call the CEO. Ask them questions. Go on their website and look it over. Talk to people who have received assistance from the organization. That is the best way to be an informed donor. There are bad charities so donors have a right to ask questions,” advised Heim-Myers.

Right now, approximately 25% of  money coming into the organization goes towards administrative and fundraising costs. Heim-Myers said, “We try to be very frugal and we want to spend our money wisely. At the same time, we want to have good people and we have to be competitive in getting them to work for us.”

Fortunately, the people who work in the non-profit world are in it to make a difference and help people. As a result, they understand the financial limitations. Heim-Myers said, “None of them are ever going to be rich but their souls are rich because they are doing such great work.”

Being part of the bigger picture

The Huntington Society of Canada not only helps Huntington disease families and researchers, they also are helping the entire patient population of Canada. Heim-Myers chaired the Canadian Coalition for Genetic Fairness to get legislation passed that would make sure that people would be free to undergo genetic testing and not be concerned that the test results would be used in a discriminatory manner (by employers, insurers, and/or businesses).

Such legislation would allow patients across Canada to enter clinical trials more freely. Heim-Myers said, “we realized that this Bill was not only important to the Huntington disease community but also to the rare disease community overall.” Heim-Myers added, “so my advice to others in patient advocacy is to learn how the government works and don’t be intimidated by it.”

Learn how to tell your story

Heim-Myers is a strong believer in open communications and collaborating. She also is the type of CEO who will pick up the phone to tell others what she has learned or ask others for advice.

According to Heim-Myers, the key to succeeding is getting good advice and using it. Heim-Myers said, “Get great coaches to help you learn about the government, research, advocacy, etc. And learn how to tell your story so people really understand what they are supporting. If you do those things and work hard, everything will fall into place.”