WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, January 5, 2012

MitoAction.org vs Umdf.org

Which one do you prefer?

When I break down the two and compare them, my preference is Mitoaction. As a parent to a Mito patient if something new comes up and my online support group doesn't readily have some advice then Mitoaction always has what I need, from a parent perspective.

On the other hand, if I need to refer a Dr. to a website for them to gain more information about Mito in order to treat Abby, I send them to umdf.org.

In exploring both sites Mitoaction just seems more "patient friendly." I have heard similar feedback from a lot of other Mito families as well. Umdf seems more "technical"- which doesn't have the appeal for me. It is like the Mitoaction site is a like having a super friendly and smart family Dr- just warmer and closer to your family, where UMDF feels like that super smart specialist that is brilliant and you were glad you went because you learned, but you did not get any warm and friendlies!

Umdf.org has a larger presence- they do seem very plugged in with specialists and researchers and boy do we ever need that! They have done a great job of putting together fundraising and awareness as well as local support chapters. I haven't been to a group meeting in Houston yet, but I have one on the calendar. I admit I am really not a fundraiser/support group type- but I am a junkie for information, so I am a little surprised I haven't found myself in a meeting yet. I am afraid it will be repeat information or cheerleading activities- neither of which I tolerate well. So far most of the meetings in our area have not been at great times for low energy families- and being in downtown Houston in the evening on a weekday is about like planning a week long vacation for us!! The next meeting is on a Saturday- I plan to attend before I make any more assumptions.

Mitoaction is now working to set up support groups! Which I think will serve our communities well. There is something about just being with other families who "get" what your journey has been. Sounds like they will let each group develop it's own culture- which is great! Some of us thrive with a cup of coffee, little ones playing and just frank chatting. Some of us need more organized activities for support- it will be interesting to see how organic these groups are and the individual cultures they will develop.

Rumors abound this year that UMDF is planning some changes. We will see. Most of these rumors are coming from a few volunteers who claim they are held to secrecy- which instead of making me excited, just annoys me. However, I am not into the games or politics- which is unfortunately what I seem to have run into a few too many times.. I don't have the energy, and as you have likely noticed in my blog, I am not one to hold back.

I would like to see both Associations work together to serve better. I see Mitoaction as serving the patients, and UMDF as serving the scientists- but who am I to tell two great organizations what their focus should be? Hopefully though, neither organization models themselves after the MDA. I would like see frank transparency on how they are spending their donations and would like to see as much go to go to patients in need as to researchers.

Right now I and many others feel like we are obligated to either be Team Mitoaction or Team Umdf- it is an awkward place to be to support both organizations- being that I am not a team player, it might be easier for me.

I see 2012 as being a year where these two organizations define themselves - I am watching closely.


Leslie Haynes / joyfor5@me.com. said...

I am caught in the middle also when it comes to both sites. I was a patient at Cleveland Clinic for 10 years being treated for my adult onset mito. you said it in your description of each place. mitoaction for personal benefit UMDF for clinical side of these terrible diseases.
in regards to Mitoaction, after my dr left CCF 11/2 yrs ago, I did find some answers to my disorder. I can now understand myself and explain it to other people by listening to mitoaction's podcasts one night. it was like this dr was talking about me. anyway, as you can see I gab a lot when I find someone who knows what I am talking about.
I have complex ll/lll disorder, carnitine deficiency, among quite a few other issues.
thanks for listening.

Post a Comment

Copyright 2009 Abby Mito. Powered by film izle film izle favoriblog blogger themes izle harbilog jigolo