Below is a new article written for FightSMA and FighterMom. Some material in this article comes from the FighterMom Manual.

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You CAN Make Things Happen in Washington for Your Cause

FightSMA, the organization my husband and I founded in 1991, is an international nonprofit organization working toward a cure for spinal muscular atrophy (SMA). We haven’t always been a big organization, however. As with all grassroots efforts, we started small and had a lot to learn.

When we launched FightSMA we knew we had to work hard to get the federal government to increase funding for spinal muscular atrophy. We met with our congressional representatives and with the head of the relevant institute within the massive National Institutes of Health. We received useful insights and nice photographs for our newsletters, but failed to increase the small NIH budget for spinal muscular atrophy research.

Our fortunes changed, however, as we gained experience. Our latest successes involve the SMA Treatment Acceleration Act, proposed legislation that was recently introduced for consideration in the U.S. House and Senate. The bill was created by a coalition of SMA groups that includes the organizations Families of SMA, the SMA Foundation, and FightSMA.

Below is a list of the some of the things we’ve learned. Donna Mullins of Washington, D.C. public affairs group Winning Strategies and Steve Eichenauer of Public Strategies Washington provided these tips. Hopefully they will help you have more success the FIRST time you solicit the federal government for your cause.

The Power of Partnerships

Our first successes with Congress came when we “threw in” with other SMA organizations that had taken on Washington as a strategic priority. As part of a coalition, we were harder to ignore, and thus started seeing real results. Research what other organizations are already doing to raise funds or awareness for your cause and, if possible, partner with them. Be sure, however, that your goals are one in the same.

Additionally, when scheduling appointments with a representative, it’s best to book a group of visitors. A “pack” of constituents may be more likely to get face-to-face time with a representative.

How to “Attack the Government” from Multiple Fronts

While it’s an excellent idea to travel to Washington, you can also bring your representative to you. Contact the home district office and invite him or her to an event you’re sponsoring. Engagement at home, when they’re working to impress voters, can be a great way to get their attention.

Know What You Want

This can be one of the hardest things to figure out. Some representatives are willing to take up the cause of raising awareness and work toward more funding for a cause. Others believe that the scientific community should drive funding decisions. Additionally, many elected representatives fear that taking up one cause will open themselves up to criticism from constituents who are pushing other causes. As a guide, find out what they have done on behalf of others. Make it a goal to get at least as much for your cause.

What To Avoid

It is important to know what your congressional representative can or cannot do. For example, members of Congress cannot dictate where the NIH spends money. However, they can draw attention to the concerns of a constituent and raise questions about the level of funding.

Make the Most of Your Time

When you sit down for your “Big Washington Meeting”, tell your representative what you think the government SHOULD be doing, and ask directly for their assistance. This is not the time to be bashful.

Don’t be surprised if your representative doesn’t show up for your meeting, and don’t underestimate the role of the staffer who is there. That person may be your regular point of contact, so build a relationship with them.

Cut to the Chase

Finally, when you do sit down with your elected representative or his/her staffer, start talking right away about what you want. Legislators and their staff are very busy, so this is not a time to be long winded. When you present your case, be sure to relate it back to his or her home district. Some statistics about how your cause affects their home state or district can be extremely effective.

Bring Materials

Create a one-page document to give your representative or his/her staffer during your visit. The document should be bulleted and easy-to-read, and include all of the important information about your cause, including contact information for you or your organization.

Don’t be Afraid to Follow Up

On any given day in Washington, members of Congress have about 20 different people visiting with them and seeking assistance. After your meeting, be persistent. Phone or write to remind your representative what was discussed and what was promised.

While following this plan doesn’t guarantee success, not having a plan will nearly guarantee failure. Good luck in your efforts.

To learn more about the SMA Treatment Acceleration Act, visit the FightSMA website. You can also listen to episode three of Fighting Back Podcast, a program produced by FightSMA and FighterMom, to hear Martha Slay discuss recent FightSMA congressional visits.