Monthly Mission: Why did you become a Champion?
Mayo Clinic Champions make a difference for others. They understand what others are going through with their health care journey because they’ve been there. People join the Mayo Clinic Champions program for many reasons, but the program would like to hear why you chose to join.
Some Champions join to:
- Reach others to help them find answers
- Learn more about Mayo Clinic
- Share their experiences to show others are not alone
- Spread the news about what Mayo Clinic has done to help you
Or there are many other reasons that may be unique for you. Share why you became a Mayo Clinic Champion in the comments below or email the Mayo Clinic Champions program.
Interested in more newsfeed posts like this? Go to the Mayo Clinic Champions blog.
Wow - I am so sorry about your little one; and give you praise for your work in bringing attention to this unknown rare disease. My husband and I just moved from WI where there were other rare genetic diseases noted & cared for at Children's' Hospital in Milwaukee over the last 30+ years. As a nurse, I remember the heartaches and difficulties in gaining information, treatments, and answers that weren't always there. It continues to be an area of high emotions, stillness, research and prayers.
You are amazing to do what you have done. I had a sister that fought obesity all her life. She died at age 50. Due to diabetes and heart problems and numerous other things she dealt with because of her health. I loved her so much. I feel she is in a better place because no one should have lived like she did. She was in the hospital more than she was out. I pray you fight this and continue your journey to a better life.
I found this site when I was already well into remission, and wished I knew about it when I was going through treatments. I would have loved to have had others to talk with about the way I was feeling. I received my initial treatment at Mayo and was then sent to my home state to get treatment. Mayo saved my life, and I was treated so wonderfully, I wanted to share that experience with anyone it might help. When I was going through the treatment, I just put one foot in front of the other and made it through. It wasn’t until later that I realized what I had been through. It is also to talk with people that know exactly what you’ve been through. It’s a great network!
Thanks for joining us as a Champion @sutter14. I'm hoping the program can provide you with some ideas and opportunities to reach out and help others. It sounds like you have some great experience that others would love to hear about. I'm sure you make more of an impact than you think on others!
Welcome aboard @team4travis. Lee used to be my manager in my old role at Mayo Clinic actually. He's a fantastic speaker and I can see how he could inspire you. Being President of a nonprofit (T.E.A.M. 4 Travis) is an amazing way to tell your story and help others. I'm glad many of the Mayo Clinic resources have helped guide you along. Keep up the great work.
I'm so happy to hear this @mepowers. I'm glad you are doing well. Sharing your experience to help others find hope and healing really makes you a Champion. I'm glad your experience can help others and get support as well.
All my health records are in one file and all facets of my health service are immediately aviiable to each and every doctor that I have an appointment with,
Thank you Tony, for the warm welcome! Yes, Lee was a great speaker, I'm sure he was a great manager too. I look forward to being part of this community and continuing to advocate for Isolated Congenital Asplenia, fundraising for research and treatment as well as raising awareness!
Hi nurseheadakes, thank you for your kind words about our work at T.E.A.M. 4 Travis. We're getting involved in the rare disease community and learning more about so many trials and tribulations as people search for answers to their rare disease. Unfortunately, we had no idea Travis was born without a functioning spleen, this was only revealed after his death, during an autopsy. So, the work we do is in Travis' memory, creating his legacy by hopefully calling awareness to ICA and contributing to research and development of a diagnostic, so that other families don't have to experience death of a child from this silent killer.
The death of a child can never be described adequately or sincerely because there are no words to envelope it. I have a sister/brother-in-law who lost their first born years ago after having him for only a few days as well. For them, it was not a tumor or disease but accidental exposure of radiation to mom/baby during the pregnancy that ended his life early (encephalitic) It was a shocker as well. Something preventable but nothing they could do. He would have been the oldest Grandson for our extended family but instead he is with our Heavenly Father awaiting us when we join him. There is our Hope.