We were thrilled to chat recently with Susan Madigan, a longtime supporter of NephCure and grandmother to a young granddaughter who has Minimal Change Disease. Susan has been involved with NephCure in many ways over the years, and we talked with her about the different events and programs she’s contributed to. One of the programs that Susan has been a member of is the CureMakers recurring monthly giving program—meaning she has signed on to contribute to NephCure on a regular monthly basis! Her support has truly made a difference in our work, and we’re pleased and delighted to have her as a member of our community and to share her story with you today.
NKI: How long have you been involved with NephCure, and how did you first become involved?
Susan: My involvement with NephCure revolves around my concern for my granddaughter. She was diagnosed with Nephrotic Syndrome when she was four, and she’s now almost ten. I didn’t get involved right away in the beginning, not knowing much about it. And then I did, in 2012 I became more involved, and then I think I became a CureMaker. I’ve been coming to your Countdown to a Cure gala in New York and supporting my daughter’s walks in Los Angeles for a few years. And I’ve been to a couple of other things here in New York.
I’ve been to the Countdown to a Cure gala two or three times now. One time I had a conflict, but from then on I’ve always blocked that whole period off. I know it’s in November, so I make sure I’ll be around for it.
When my granddaughter was first diagnosed, she was swollen, and my daughter and son-in-law thought she had a bee bite or something. They hadn’t a clue what it was all about; no one did. She woke up swollen and they took her to the pediatrician who said “No, it’s not a bite.” They were able to figure out her diagnosis right away. She now has a wonderful nephrology support team in LA, including her long-time nephrologist, Dr. Elaine Kamil [who serves on the NKI board] as well as Dr. Dechu Puliyanda, her current day-to-day nephrologist.
I don’t talk to my granddaughter much about it; we don’t hide it, but it’s not a constant topic of our conversation. At this point, she’s doing alright. Certain things could still be in the future for her that obviously, we can’t know, or that she can’t comprehend yet.
We’re all very committed and we all try to stay on top of it, but some of it is still a big mystery in my life. But if there’s anything I can do to help, I’m thrilled to do so.
NKI: You’ve been involved with so many activities with NephCure—what’s been your favorite thing so far?
Susan: I love the walks—my daughter’s walk involves a lot of children. Her support group is full of children, and she has t-shirts made for everybody, so we all wear the same shirt. The kids have a banner that they carry. And I like that, because I think it involves the patient—the child—as well as his or her friends, so that they’re aware that something is happening there. I like that a lot.
To me, the gala is also very special, because it gets everybody there and involved. You get all these great people there, and it’s pretty and a lot of fun. I think the auction is great because it raises money for NephCure. The last time I went, I didn’t realize my paddle was in my hand and I kept raising it, (laughs) and finally I thought, after the third time, you’ve got to put this on your lap!
NKI: I know that you and your granddaughter live on opposite coasts. Does donating monthly to NephCure as a CureMaker help you feel connected to her?
Susan: I think to contribute to an organization on a sustaining level is A. easier for the person who donates, and B. you always feel connected, not just at the end of the year, if you choose to donate then. I think it offers security for the organization to know that you have “X” number of people who will be contributing on a monthly basis. And for the people who donate, it’s a very convenient, painless way of doing it! It’s an easy way to contribute for people who want to give, but who may sometimes forget at the end of the year. I love it, I think it’s just wonderful. I also tell my granddaughter about it so that she knows I’m supporting her on a monthly basis.
I really think NephCure is doing an incredible job—as someone said, it’s a disease without a cure, which is rather a disheartening way to put it, but certainly at this point there’s no cure for it. And anything I can to do help, I’d be thrilled to.
NephCure would like to thank Susan for her unwavering and touching support in honor of her granddaughter. Without dedicated people like Susan, the work that we do at NephCure to provide support and education for people living with Nephrotic Syndrome and fund research to find better treatments and a cure would not be possible. Thank you, Susan!
To learn more about the CureMakers monthly giving program, visit our donation page here or give us a call at 610-540-0186 x10. To hear more about a local walk in your area or our Countdown to a Cure gala in NYC, send us an email at email@example.com to get connected with your regional manager.