2010: Top 6 Successes

Last year we published a post highlighting our top accomplishments of 2009.  It’s been getting a lot of traffic recently, so I figured that it’s about time I make a similar list of top successes in 2010.

(1) Parity for HD – In 2010, we worked with the Huntington’s Disease Society of American to persuade 155 Representatives to cosponsor the HD Parity Act (HR 678).  We also persuaded 180 candidates for Congress to complete and return our candidate survey in support of the HD Parity Act and funding for HD research.

(2) Get Seizure Smart! – We reached 2.25 million Americans through the Get Seizure Smart! campaign.  Organized with the Epilepsy Foundation, the campaign had a simple call to action: Distribute the Get Seizure Smart! quiz to family, friends and coworkers.  More than 2,000 people responded and 95% said they’d do it again.

(3) Shaking the Tree – We created a corporate and foundation sponsorship marketing plan for National Geographic Education.  We focused their messaging on “reach, results and reputation” and created an off-the-shelf corporate sponsorship package that will help the NGE team raise bigger bucks in 2011 and beyond.

(4) Generating Media – We generated significant media coverage, print and online, for the Hanover Investment Group and established them as economic “thought leaders.”  Placements include Bloomberg News, The Economist and the Financial Times while interviews with the Wall Street Journal and Reuters may lead to future coverage.

(5) Get the Bug! – The annual MV Big Flea charity event raised a record $25,665 by selling items donated by members of the community.  By being interesting and using low-cost word-of-mouth communications tactics, we’ve also generated 50,000 visitors to our website.  Not bad for an elementary school PTA fundraiser.

(6) Congress Responds – The PAD Coalition is seeking better coverage to test for atherosclerosis of the legs, also known as clogged leg arteries.  In 2010, we succeeded in having a key provision included in the Affordable Care Act (health care reform).  We also generated a letter from 15 Representatives in support of our key policy directive.

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A Bright Idea for Raising Awareness

Nearly every nonprofit tries to raise awareness about its cause.  Unfortunately, most rely on the same old tactics which, I find, don’t really reach or educate that many people.

Most groups try to raise awareness with media coverage.  They issue a news release, call a few reporters, maybe post a video on YouTube, and hope for the best.

If you’re lucky, this can result in a couple news stories.  But because we live in a 24/7 media culture, those stories are largely forgotten the next day.

My recommendation?  Stop focusing on mass media and start using “people media” to spread the word.  In other words, get your members and supporters to spread the word, and raise awareness, for you.

While mass media is fleeting, personal communications are persuasive and can have lasting impact.  Think about it this way: What would convince you to try a new restaurant in town, a newspaper advertisement or a recommendation from a friend?

Nonprofits often have thousands of volunteers who are willing and able to spread the word.  Put them to work!  By giving them specific tasks to perform, you can reach millions with your message while cultivating an active, informed and engaged membership.

The Epilepsy Foundation used this strategy for National Epilepsy Awareness Month in 2010.  It created the Get Seizure Smart! quiz and told volunteers how to distribute it.  More than 2.25 million copies were distributed through schools, libraries, businesses, houses of worship and online.

It gets better.  More than 95% of campaign participants declared it a success and said they’d do it again.  This is also a great way to show your members the value of supporting the organization.  My guess is that a follow-up fundraising appeal to this engaged audience would do spectacularly well.

Fortunately, a word-of-mouth campaign doesn’t cost a ton of money to create and implement.  So the next time you need to raise awareness about your cause, forget about mass media and instead harness the power of your supporters and friends.

A Hatchet Job on Health Care Advocates

The American Journal of Public Health published yesterday an article examining the relationships between health advocacy organizations and the pharmaceutical industry. The following is my response to the author:

I am writing to express my complete and utter disappointment with your article “Efforts to Undermine Public Health” which examines the relationships between health advocacy organizations and the pharmaceutical industry. I’ve worked with many non-profit health organizations over the last twenty years – several of whom are named in your article – and take great exception to your characterization of their relationships with pharmaceutical companies.

Given the nature and scope of our health care system, it is inevitable that health advocacy organizations and pharmaceutical companies have overlapping and shared interests. That a company would choose to fund initiatives in alignment with their business interests is also inevitable, and not surprising; would you expect Halliburton or General Motors to fund a cardiac health awareness campaign? And while I agree that disclosure of these relationships is beneficial, their mere presence does not constitute de facto “conflict of interest” or “biases” as your article strongly implies.

In the 1990s I served as the National Director of Advocacy for the American Diabetes Association. At the time, insurance companies routinely denied patients coverage for necessary diabetes supplies – insulin, meters, testing strips and syringes. To address this problem, the Association launched a nationwide advocacy campaign to enact laws to require coverage for these items. This campaign was supported, in small part, through the sponsorship and technical support of Eli Lilly and other companies.

As a result of our efforts, nearly 40 states enacted laws requiring coverage of these items; Congress also enacted a law that required Medicare to improve its coverage for these medical supplies. Did our corporate partners benefit from the enactment of these laws? Most assuredly. But the real winners in this campaign were the millions of Americans affected by diabetes who, prior to the laws enactment, were unable to obtain these necessary medical supplies and effectively manage their condition.

This was made clear to me one morning during a summer vacation in Maine. Seated at a small town lunch counter, a woman overheard my conversation and approached me. “Were you involved with the diabetes campaign here in Maine?” she asked. I responded yes and she said that for the first time, her elderly father could now obtain the test strips and insulin he needed to effectively manage his type 2 diabetes. “Thank you,” she said, almost in tears. “You have no idea how much this has changed our lives.”

That conversation took place more than a dozen years ago, but I still remember it vividly. It reinforced to me why we launched our campaign, and the positive impact we could have on people’s lives. That is what health advocacy organizations do, on a daily basis. Your article not only discredits that honorable work, but demonstrates a stunning lack of understanding about their missions, the who work there, their millions of committed volunteers and the needs of the people they represent.

Make Your Cause an Election Year Issue!

Election Day is a month away. While the Tea Party’s grabbing the headlines, other groups are quietly working to bring their issue to the 1,000+ candidates running for Congress.

Two groups with whom I’m working have issued candidate questionnaires, one on Huntington’s Disease and the other on epilepsy. Our goal is to have as many candidates as possible complete and return the questionnaire to us.

And many of them do. “I am proud and happy to commit to my answers on your survey below,” responded candidate John Willoughby (HI-02). “Please be sure to keep me posted on issues and breakthroughs associated with your efforts to battle and eradicate this terrible disease.”

Advocates are a key part of the campaign.  They can help by contacting local candidates and urging them to return the questionnaire.  Both the HDSA and Epilepsy Foundation have created online action centers where advocates can easily send emails to candidates in their area. Continue reading

Pizza (and Other Ideas for Raising Epilepsy Awareness)

I’m in Long Beach, CA at the Epilepsy Foundation’s annual Leadership Conference.  The meeting provides skill-building workshops for staff from the organization’s 50 affiliates and national office.

I led two sessions, including one on the upcoming National Epilepsy Awareness Month (November).  Our goal is to make 1 million Americans “Seizure Smart.”

My message: Stop relying on the “mass media” in to raise awareness about epilepsy.  Focus on getting people with epilepsy to spread the word. That means DIY (do it yourself).

“Grassroots” conversations are so more effective than the mass media.  They’re more persuasive, and they stand out from the 3,000 marketing messages we receive every day.  That’s more than 1 million messages a year!

During our brainstorm session, we came up with three great ways you can put the Foundation’s Seizure Smart Quiz in people’s hands:

  1. Ask your local pizza parlor to tape the Seizure Smart Quiz on every box that leaves the store in November (other merchants can put them in bags).
  2. Distribute the Seizure Smart Quiz to everyone at work, school, church and anywhere else you can imagine.
  3. On Election Day (November 2nd), recruit a few people to hand out the Seizure Smart Quiz at your local polling location.

By doing these three things, any person can easily reach 250 or more people.   And with 3 million people affected by epilepsy, we should have no problem finding 4,000 people to take action and reach our goal.

Got any more bright ideas?  Send ’em my way!

Advocate Profile: Sally Nyakanyanga

A few weeks back I was contacted by Sally Nyakanyanga. She’s a journalist living in Zimbabwe who happens to have epilepsy.

Diagnosed at age 11, Sally’s encountered a lot of misunderstanding.  She is now working, against great odds, to change the situation in her country (click here to read her story).

According to Sally, many in Zimbabwe think a women with epilepsy is possessed by the devil.  Even “my family strongly believed someone had bewitched me.”

“I have now grown up to accept my condition,” Sally continues in her personal story, “and work for the rights of those like me.  My mission is coming up with a center for women living with epilepsy in Zimbabwe.”

Because of the political and economic conditions, Sally admits this is no small task.  “It’s difficult,” she writes, “and I have been trying hard for people to understand, especially our leaders and policy makers, to do something to help us.”

Sally has applied to participate in the 5th annual International Women’s Institute on Leadership and Disability, a three-week crash course on organization building.  But that’s not a sure thing and she wants to get started right now.  Of course, she needs funds, but that’s not all.

“Access to medication and medical expertise, moral support, educational and training materials, technological equipment” Sally writes about her current needs.  In fact, she says she can use any kind of assistance that “will help in empowering women with epilepsy.”

If you’d like to help Sally, please contact me at joseph.lamountain@gmail.com or you can reach her directly at snyax2002@yahoo.com.

Take Action: Stop Harmful Restraint in Schools!

(February 26, 2010) – Hard as it may be to believe, the use of restraint and seclusion in schools is not uncommon and can be extremely harmful.

Reports have detailed hundreds of abusive uses of the practice, most frequently on children aged 6-10 and disproportionately on children with disabilities, including epilepsy.

Disability advocates are calling for national day of action today to show broad support for the “The Preventing Harmful Restraint and Seclusion in Schools Act” (HR 4247 and S. 2860).  If enacted, the bills would , though not completely outlaw, the use of restraint and seclusion in schools.

It would also require states to develop written policies for their use and to allow this extreme practice only in an emergency. The bills would also provide grants to better train school staff.

Disability rights organizations are urging all Americans to contact their Representative and Senators today. Urge them to cosponsor HR 4247 (Representative) or S. 2860 (Senators). Click here to send an email or call the US Capitol Switchboard at 202.224.3121 and ask to be connected to his/her office.

The bipartisan legislation was introduced by Representatives George Miller (D-CA), Cathy McMorris Rodgers (R-WA) and Senator Christopher Dodd (D-CT).

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