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Advocacy spotlight: Mother and daughter Ambassadors advocate for kidney legislation

Mother and daughter AKF Ambassadors Ruth and Crystal are doing their part to fight for positive kidney legislation. Check out our blog for their advice for effective advocacy and how being Ambassadors helps them navigate Crystal's kidney disease.
AKF Ambassadors - Crystal and her mother Ruth

When you think of mother-daughter activities, a trip to visit your elected officials to advocate for kidney health legislation probably does not cross your mind. But that is exactly what Ruth and Crystal Scott did during the American Kidney Fund's (AKF) Kidney Action Summit this year. Although Ruth lives in New York and daughter Crystal lives in Maryland, becoming AKF Ambassadors has been a way for them to connect as they fight to improve the lives of those living with kidney disease, like Crystal.

During the Kidney Action Summit, both Ruth and Crystal met with their respective state's U.S. senators to advocate for the federal Living Donor Protection Act and the Jack Reynolds Memorial Medigap Expansion Act. Although Ruth became an AKF Ambassador more recently, her background as the first city-wide councilperson of color for Rochester, New York, meant she was very comfortable speaking with her members of Congress.

"Having had those connections, she's a far more forceful advocate because she knows how to ask the questions in a way that holds elected officials accountable," said Crystal. "And that's been really helpful."

For her part, Ruth said it was a fun experience to talk to her representative — Congressman Joseph Morelle — during the Kidney Action Summit since she already knew him from her days as a politician. "It was interesting to see him in a different light and to see the senators be so engaged," she said. All her members of Congress "assured us that they were totally in sync with making sure that these bills got passed, so that was nice." (One of Ruth's senators, Senator Kirsten Gillibrand, is one of the main sponsors of the Living Donor Protection Act.)

Like her mother, Crystal is fortunate that her Congressman, Jamie Raskin, is "all-in" on supporting legislation that improves the lives of those living with kidney disease. She met with both him and Senator Chris Van Hollen during the Kidney Action Summit. Although it was her first time meeting with Senator Van Hollen, she had met with Rep. Raskin at several previous events, including a breakfast Rep. Raskin hosted. Both mother and daughter agree that attending meet-and-greet events, like breakfasts with your members of Congress, is helpful for promoting your cause when it comes time to advocating during events like the Kidney Action Summit.

"Building up that relationship and maintaining that relationship means that I'm really able to call on [Rep. Raskin] as new legislation comes up or bills come up that may be restrictive for kidney care or may need his sponsorship to expand those things," said Crystal. "It's always good to have a relationship that actually is forged and becomes a friendly relationship where you can be candid about [the issues]."

As a former city councilmember, Ruth also knows firsthand the importance of building relationships with your elected officials. From her experience, she would advise you to research and prepare for your meetings. That way you will be confident in your meetings and your elected officials will know how serious you are about the issues. "Those things build relationships," said Ruth, "and it's relationships you want to build in order to have any influence on a representative."

Both Crystal and Ruth describe their family as "political" and expressed feeling very comfortable talking to elected officials. They recognize that not everyone has the same background as they do, but hope that those who are not as experienced talking to elected officials will persist.

"You keep trying," advised Crystal. "You keep trying to get on their calendar. You keep trying to meet them. You go to the spaces where they're going to be and get near them."

Sometimes you may not be able to meet with your elected official directly. Instead, you may be offered a meeting with a member of their staff. Crystal says you should not "get discouraged if you meet with a staff member" because that staff member may be the person who has the connection to kidney disease that will make your story relatable to the elected official.

Crystal has been that connection for staff members. A friend of hers works for an elected official in another state, and Crystal's experience with kidney disease made that friend fight a little harder for legislation that would improve the lives of people with kidney disease in her state.

Crystal was diagnosed with kidney failure in February 2012. She immediately started peritoneal dialysis, which she continued on and off for six and a half years before receiving a kidney transplant. Crystal became an AKF Ambassador about ten years ago because she saw the "opportunity for me to give back to the organization that has helped me out."

About two years ago, Crystal encouraged her mother to also become an Ambassador. In Ruth's case, she joined because she wanted to better understand what her daughter was going through — "it gave me some sense of what Crystal might be going through and a little bit of understanding about how I might be of help," she says.

"It's been a good time," Crystal said of having her mother as a fellow Ambassador. "She's been in on the on the Ambassador meetings and it's been really great. I'm excited and happy that she's gotten engaged."

Take action: Want to get involved like Ruth and Crystal? Text KIDNEY to 52886, or click here, to sign up for our mobile advocacy network and receive texts when there are opportunities to get involved in your state.

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Meredith Deeley

Meredith Deeley is a communications specialist at the American Kidney Fund.