Just wondering if anyone on this listserve will be attending the Nephcure Gala Event in Ann Arbor this week? Erich
Just wondering if anyone on this listserve will be attending the Nephcure Gala Event in Ann Arbor this week? Erich
I have been thinking of attending the event for a long time. My going will of course depend on how I feel as I have FSGS and waiting for kidney transplant. It seems that I feel I am strong enough to go to that event tonight so I might be there.
My family (about 30 of us) are going. My daughter has FSGS.
Hope to see you there.
Wow, that was a big group. Are you related to Molly the delightful young lady who made some of the presentations?
It was a very moving video. Were you are a loved one in the video?
My spirit to help others with FSGS was renewed by the event.
My wife and I met a young couple who's fiver year old son was diagnosed with this condition last year. Their world has just been turned upside down.
My wife and I know the pain of having a Nephrologist come in and say, "You have a real terrible disease. One that we know nothing about." But to hear that said about your child would be devastating. Perhaps you know the feeling. We were very moved by their situation.
I'm sorry you and I didn't actually meet, but we were there together in spirit.
Good luck to you, Erich
Hi cks689:
Did you make it? I thought it was a real moving event.
How long have you been on the list? Are you listed in any other states? I was called to Wisconsin before Michigan after choosing to list in both states. I understand listing at the Cleveland Clinics is also a good place to second or third list. There is nothing wrong with multiple listing since the kidney goes to the person with the most compatible match. If you get yours from Ohio, perhaps an Ohioan will get his from Michigan.
Here is praying you don't have recurrent fsgs! Erich
If you wonder what I look like you can check out the program from last night. I'm Erich, Patient. I hope you all enjoyed the event. My wife and I surely did. Erich
Yes, I'm Molly's mom, and very proud of her.
My name is Meg and I can relate to ones world being turned upside down by a dx like FSGS. We still ride the roller coaster of emotions, but Molly makes it easier. I'm sure you could see how brave she is, and that that kid has a special spark. We have a great team at Childrens Hospital Of MI who care not only for Molly's physical needs, they support our family as well. Molly's nurse has told us that she is no longer a patient, she is family. That makes all the difference.
Nephcure has been very supportive to us as well. I think there website is great, and the Henry, Miriam and Kevin are terrific. What I like best about working with them is that I feel like I'm at least doing something for a situation which is really out of my control. Once we settled into the routine of meds and Dr. appointments, it felt good to start doing even little things that had tangible results. Since Molly has proven to be treatment resistant (so far), working with Nephcure has been a great way to channel the frustration of FSGS into something that WILL make a change for my daughter and others. As was evident at the event last night, our family feels the same way. The girls that got the awards for the cell phones are my nieces. I am so proud of them. The other cuples that recieved awards are MOlly's grandparents who got sick of waiting for the meds to work and each started Letters for Life Campaigns to feel like they were doing something.
I have to say that we have been very blessed through a completely horrible situation (FSGS). My hope is that other patients out there can recieve the support that we have.
Feel free to e-mail me at mmmodes@sbcglobal.net
Sorry we didn't get to meet in person.
Meg
Oh yeah, my husband and I are in the video. I think there was only one shot of us. My husband is wearing a grey black suit and I am wearing a pink sweater. We are seated together.
Last night we sat with Molly last night right behind Big Al.
Hi, Erich, I am Cynthia and I am in the program as well. I arrived 15 minutes before the program started so I was one of the last ones who got in there. The traffic was very heavy and the sun was very bright and was constantly on our faces. Anyway, I made it and it was a very successful event, I think, because the place was full. Sorry, I missed you but I am sure that we will do this again next year.
I am listed in Michigan. I go to the Henry Ford Hospital in Detroit. How do you go about getting listed in more than one state?
Thank you for all your concern and kindness. God bless you and you will be in my prayers.
Cynthia,
Sorry about the traffic, but glad you made it. While the event was wonderful it wasn't very condusive to meeting new people. We could have been standing next to each other and not really have the opportunity to get to know each other. But, I did find the event to be very inspirational.
Below is contact information for the University of Wisconsin Kidney Transplantation Program and the Cleveland Clinics Kidney Transplantation Program. In both cases, you just need to call to set up a visit. You can also talk to their transplant coordinator if you have any questions.
Good luck and hope to see you again and this time meet you. Erich
University of Wisconsin
http://www.uwhealth.org/page.asp?contentid=10362
Contact Information
To refer a patient:
(608) 263-9531
Cleveland Clinics
http://cms.clevelandclinic.org/transplant/body.cfm?id=115
For More Information about Kidney Transplants
If you have any questions or concerns, please call us at
(216) 444-6996. We will be happy to answer your kidney transplant questions
Thank you Erich, I was in tears while watching the children in the movie. I cried after reading the stories in the program at home. Inspite of the pain and suffering, everyone was and is full of courage and hope and enthusiasm and I still saw happiness instead of sadness in everyone's faces. Molly was really great. I would have wanted her interviewed on TV to create awareness as well as the doctors and the others there. l did not see a TV crew. Was there a press release on that event? I wonder.
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