Tuesday, March 16, 2010

My my, how things change

I was talking my dear sweet husband's ear off last night about some exciting events that are going to happen in the next few weeks when it hit me. In the middle of my 90 miles an hour speech, I stopped and thought out loud "3 years ago, if anyone would have told me that I would be getting excited about stuff like this, I would have called them crazy."

But in reality, our life has changed so drastically in the last 2 years that what we once would have imagined to be crazy is indeed truly exciting!

At last summer's mitochondrial symposium, I met a wonderful mom from Orlando who was interested in raising awareness and funds in our state for this disease. She and I quickly became friends, and she convinced me to become the UMDF ambassador for my city. The two of us, along with another new friend from Tampa, were encouraged to start a mito group for our state. A bit reluctantly, we did, and it seems to be taking off fairly well.

This Saturday, March 20th, we will be having a support group luncheon in Winter Park. We look forward to chatting with other families about this disease and how to raise more awareness and funds for the diagnosis, treatment, and cure to mito. Any family who is interested in attending this meeting can contact me (amberferrell@gmail.com) for more information.

Next on our agenda will be Grand Rounds in April. This is something that I have wanted to happen at our hospital since we were going through the diagnostic realm with Nathan. While there are a couple of our docs who understand mito quite well, there are still a large number who are not familiar with it or are only familiar with severe cases...or even worst, they mostly know the myths that are associated with mitochondrial diseases and think of those as truth. Secondly, I wanted Grand Rounds at our hospital because many families will not have the opportunity to travel out of state to hear a doctor specializing in this disease talk, so I wanted to bring these doctors to our state. In attending the symposium and in meeting with Dr. Koenig in Houston, we have gained invaluable information on how to care for Nathan...I wish this opportunity was accessible to everyone dealing with this disease.

So, our Central Florida Mito Group mentioned to UMDF (umdf.org) that we wanted a mito doc to conduct Grand Rounds at our hospitals, and they arranged that for us. Dr. Bruce Cohen from Cleveland Clinic will be conducting the Grand Rounds for physicians and for families. He will be having a physician meeting at a hospital in Tampa on April 26th, but I am not familiar with the details on that meeting. On April 27th, he will be at Shands in Gainesville. He will speak to physicians and other medical professionals in a separate meeting first and then conduct a meeting directed to individuals and families affected by mitochondrial disorders. Anyone can attend this meeting...therapists, educators, medical professionals, and anyone who is interested in learning more about mito.

Grand Rounds Family Meeting
Shands Hospital
Gainesville, Florida
April 27, 2010
Room Number: to be determined

Please contact me if you need additional information.

And lastly, we were approached last week about potentially doing a mito day at a Tampa Bay Rays baseball game in September. These plans are still in their infancy, but we are excited about this opportunity and hope the plans will continue into fruition. The game will be the afternoon of September 19th. Please contact me if you would be interested in attending.

So, LOTS of stuff going on in the mito world in Florida, and it is all very exciting!


Laura aka Mama Ham on March 16, 2010 at 11:30 AM said...

Oh, how am so blessed to have found your blog!!! Our stories are VERY similary and we have just been diagnosed with possible Mito based on symptoms and blood tests. We will also be visiting Dr. S in Atlanta in the future. I live in Richmond Va and am in desperate need to find someone close to me who has a child going through this...any suggestions?

Kim and Asa on March 16, 2010 at 1:18 PM said...

I with you Amber, all those meetings and info is so exciting!!! I just know you'll love having Cohen and I hope you get to reach many more families!! Our mito chapter has been so great for me!! You are one of the smartest mito moma's I know!!

Carol on March 16, 2010 at 6:59 PM said...

So exciting! Wish I lived closer!

Heidi on March 19, 2010 at 4:01 AM said...

WOW, thats amazing! I so wish I didnt live half a world away too :( You make me want to get more involved in my area. I am planning to help in some way with our yearly seattle childrens mito auction in Sept. though. Im so very proud of you Amber--YOU ROCK girl! Thanks for sharing--
Heidi & Jack.

Clara-Leigh on April 22, 2010 at 1:19 AM said...

Hi Amber, it's Clara-Leigh. You are right on about how things hava changed. I would just as soon attend a conference on mito or research again and again online until after midnight (like right now) and get absorbed in "it." It heals, tranquilizes, occupies me....all of that maybe. Garrett's biopsy should be in testing right now. I think we should hear prelim. results in about 3 weeks, final results in 2 or 3 months while we will be nowhere near able to come to Houston to talk to Dr. K. Praying she will share results via fax, email, phone???? But just tonight I am letting it sink in that we will learn more then, "much more" Dr. K says. But she says not likely to get a dx from this. But then how will deal with a dx....I am scared to death just thinking. I haven't stopped to think about it much lately!! Hey, would love to chat again sometime. You are so brilliant with this mito stuff and were so helpful to me!!!! However, I have lost your contact info. So if you don't mind, can you email it to me again....new email address....aaejgmom@gmail.com
Hugs and prayers,

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