Meet Jean Campbell, Rare Disease Advocate

Cara Hesse | May 29, 2012

Rare Disease Advocate and Genzyme PAL Awards Judge

As a nationally recognized rare disease patient advocate with an impressive record of success in fundraising and corporate relations, we recently asked Jean to share some of the insights she's gleaned during her 20+ year career in rare diseases. Her background includes serving nearly two decades with the National Organization for Rare Disorders (NORD), where she retired as Vice President of Membership Development after spending over ten years mentoring and consulting with many nonprofit organizations and their board of directors. She received a bachelor's degree from CUNY Hunter College and has earned certifications in fundraising, development and non-profit management. Jean is a member of the America’s Charities Health first Board of Directors and MedunikCanada’s Advisory Board. She serves as a special consultant for the Volunteer Consulting Group (VCG) and is also a volunteer grant reviewer for the City of Danbury Social Service Agency and the United Way of Northern Fairfield County.

As someone who has been a rare disease advocate for more than 20 years, how do you see patient groups today versus where they were ten or twenty years ago?
So much depends on geography. North America is well ahead of the curve, and now has technology non-profits didn’t have years ago. Europe has also made incredible strides. In developed countries, we can access media and resources that others might not have. There’s more awareness of rare diseases that’s been helped, in part, by the rise and trajectory of bio-techs like Genzyme that are focusing on rare diseases. They helped bring awareness to the issue. There’s been a huge change in the rare disease space overall in the last 20 years.

Have you seen groups grow from one or two people to a thriving organization?
Yes. I have seen NGOs mature from a small kitchen table operation to a large, thriving organization that funds research, provides services, and advocates for new policies. They are doing amazing things and some of them are even celebrating their 25th anniversary. I have also seen groups fade away or fracture.

Do you see a common thread among those groups that become successful?
Yes. They have perseverance, a common vision, and a willingness to listen. They leave “no stone unturned” in pursuit of their mission. However, I think one of the most important traits of a successful and effective patient organization is the understanding and appreciation for sound infrastructure and good governance. Successful groups understand that they need to build a sustainable organization that is built on established principles for effective non-profits – this includes things like a vibrant and engaged Board of Directors, a diversified funding base, and a solid finance and accounting system.

What advice would you give them – in terms of fundraising/development, governance, etc?
I have lots of advice! First, governance is really important. Make sure your organization has the necessary infrastructure in place so you can talk to potential funders about what you want to accomplish. It may be boring, but it’s necessary. You want to be seen as credible so that funders know that their money is being used in the most effective and transparent way as possible. Things like by-laws for your board of directors are important to building your credibility.

Second, diversify your funding streams between individuals, foundations, and industry. Look where you can build relationships and go from there. Next, always maintain good, honest relationships because people move around to new companies and new organizations. They will remember you. Treat people the way you would want to be treated. Build relationships even if there’s no money involved at the time. Even when a company goes out of business, for example, the individuals you’ve known for years will go to other companies.

Lastly, you should expect to disagree at some point – with your funders, your colleagues, your partners – it happens. But do so respectfully. We all have limitations to what we can do, even industry.  Just know that there is probably a very good reason why someone has taken the position that they have, or won’t fund your idea, even if you disagree with it. Disagreements will happen and it’s important to be respectful and to maintain open lines of communication at all times.

Why are programs like the PAL Awards important?
I think it gives groups the chance to put an idea on the table that they’ve always wanted to do or to try. It’s a chance to show the value of your organization to your members, and raises awareness among the international community. I encourage them to check out often for updates.

How did you like being a judge for the PAL program?
I was honoured to be asked. I enjoyed learning about the organizations and their needs. It was hard, though, in 2011 when it first launched. There were some great proposals and I just wish we could have funded them all. Some project ideas only needed a few tweaks and then they would have been great. It’s like anything that you do for the first time. With the first year of the PAL program behind us, I think the applicants, the judges and even Genzyme all have a much better sense of what to expect in the future. 

Some people might say that $5k or $10k isn’t a whole lot of money. How would you respond to that?
That’s easy --its $5k or $10k more than you had before! Organizations need to think differently. A program like the PAL Awards gives organizations an opportunity to educate a potential funder about the needs that exist and the organization’s ability to meet those needs. It’s an opportunity to build a relationship and to get your needs heard, even if your project isn’t funded. Not to submit a proposal would be short-sighted in this competitive environment and tight global economy.

What do you think would make an organization’s PAL awards proposal more competitive?
Put forward an honest, collaborative effort for a project idea that may not have been tried before. Also, applicants should keep in mind that not all of the judges have experience in rare diseases. As such, the proposals need to demonstrate the unmet need before putting forth their ideas. Write from the heart and be targeted in your approach.

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