March 4, 2024
Forget the old saying that March comes in like a lion and goes out like a lamb. At the Lupus Research Alliance, March is a time for intense, month-long action: when we salute Women’s History Month as well as advocate together on the Hill for lupus research funding. Spotlighting a strong and passionate woman, Patti Allen, gives us the opportunity to celebrate both – women’s achievements and an empowered lupus community.
One of her greatest accomplishments is having created the PA Fund for Patient Advocacy, a restricted fund within the Lupus Research Alliance. The mission of the PA fund is to support advocacy, education, and care for those living with lupus. The PA Fund relies on donations which are greatly appreciated – please click here to contribute.
Where Her Inspiration Came From
Like all too many, Patti was diagnosed with lupus in her 20’s, but she credits her supportive family, friends and top medical team for a life defined by more ups than downs. A pivotal moment came in 2013, when all these resources were called upon to help her conquer a life-threatening complication of lupus.
“I just felt so grateful that I wanted to find some way to give back.” And Patti did when she found one of the legacy organizations that formed the current LRA. “There was the right balance of funding research that could improve the future while keeping an eye on the patient living life in the present.” She sat in one of our support groups where she saw and felt deeply the struggles faced by people in the group who were not all as fortunate.
“I was especially moved by one young woman who confided that she was going by herself for a kidney biopsy the next day. She shared that neither of her parents were going to the appointment because they didn’t believe she was actually sick.” Not only did Patti meet the young woman at the appointment the next day, but that’s when she made up her mind to create the PA Fund to provide people with lupus and their families the support they lacked but so deserve.
The PA Fund Delivers
In addition to underwriting these support groups, the PA Fund covers the national Lupus Emergency Grant Program which has provided $220,000 in short-term financial relief for people struggling with emergency-related expenses due to lupus. “Seeing how these grants have eliminated stress, how someone has been able to stay in their home, keep the heat on, buy their medicine – just makes me want to keep fundraising and keep giving.”
The PA Fund also supported our PALS (Patient Advocates for Lupus Studies) pilot program, which pairs people thinking about joining a clinical trial with a peer who can share what their own experience in a study was like.
You Can Take It To The Hill with the LRA, Thanks to the PA Fund
This month, the PA Fund is once again sponsoring the LRA’s annual Take It To The Hill conference, which will train community members to use their personal experience with lupus to show Congress why increased government funding for lupus research is so necessary to improve treatment and find a cure. “Advocating in Washington is very powerful. There’s nothing more rewarding than seeing the PA Fund enable people to speak up for themselves and then seeing the needle moving in the right direction, to bring back funding dollars for more drug development. I want every person to know that their voice matters and makes a real difference.”
Describing her most impactful experience on the Hill, Patti described how one of LRA’s top advocates showed legislators pictures of her daughter who was diagnosed with lupus as a child. “Staffers were wiping away tears! I am 100% sure that those staffers shared that story and urged their legislator to vote for more lupus research funding.”
Patti’s advice for others advocating with the LRA: “Be prepared for your meeting with legislators as you have just minutes to use your story to influence their thinking about lupus. Be true to yourself, know your voice matters, show your passion, and never take no for an answer.”
