For Chuck Mohan:?? The UMDF Announcement

[Guest guest]

Chuck,

I recently got my UMDF renewal in the mail and I'm a bit up in the air about

what to do with it. Now, with the resignation of Rice I have even

more questions, and I'm hoping you can address them here where everyone can

get a clearer picture.

I am bothered by the high turnover in Executive Directors in the

organization and would like further explanation about Chris' resignation.

Was it political, are there management styles that could not be worked out,

was it fiscal or were there personality issues? How does the Board and the

search firm, DRG, plan to address the high turnover and its impact on the

organization now and in the future?

In the renewal packet you outlined the " outstanding services available " .

One of the things addressed was Support Network. In this area you speak of

connecting families and patients who face the same challenges (okay), but

you also mentioned that " UMDF staff will answer non-medical questions and

provide emotional support " . This very issue was recently tested by a group

member who desperately needed some support (emotional, legal and otherwise)

and she was very curtly turned away by you specifically. How is UMDF

providing emotional support and answering non-medical questions? In what

capacity, given the feedback of members do you see the needs of the

organization addressing this issue? It seems to me that UMDF could respond,

like other advocacy and support organizations, via the use of social work

interns, para-legal consultants and even pre-med students if members have

questions or issues that need to be addressed on that level.

You also stated that " my dues created a physician education project that

alerted doctors to the complex diagnosis of mitochondrial disease. " This is

news to me, and probably to many on this list who are struggling to educate

doctors on their own. Where is this project located? Is this just an

Ohio/Western PA based program? Was it ever outlined in the Quarterly

Newsletter? What about going beyond the complexities of diagnosis to the

real life issues and the complexities of treating mitochondrial disease?

How about a project that supports doctors who enter the field of treatment!

As all of us can tell you they are few and far between.

Chuck, I know you are primarily a lurker on this list, but I'm hoping you

address these issues outright. I've not yet decided what to do about my

renewal what you have to say will impact my decision.

Sincerely,

Kristie

Message: 1

Date: Wed, 13 Oct 2004 07:11:42 -0600

Subject: Sorry - The UMDF Announcement Didn't Process Thru - This is a Copy

and Paste

TO: UMDF Chapters and Support Groups, Alice ( Mitoldies)

FROM: Chuck Mohan, Chairman UMDF

RE: Office update

DATE: October 12, 2004

UMDF OFFICE UPDATE MEMO:

The UMDF Board of Trustees accepted the resignation of UMDF Executive

Director Rice effective Thursday, October 5, 2004. We wish much

success in his future endeavors and thank him for the successes he has

helped UMDF reach.

The UMDF Board of Trustees engaged the search firm, DRG, to begin the

process of locating candidates for the position.

UMDF Trustee, Dan is chairing the search committee consisting of:

UMDF Vice-Chair, DiCecco, UMDF Treasurer, Stan , and principal of

Touchstone Associates, Skip Lange.

The results of the 3rd UMDF Strategic Plan is now in the hands of the UMDF

staff. Staff will be meeting with Skip Lange, Touchstone Associates and UMDF

Trustee, Kubach, to develop an action plan for implementation of the

strategic plan.

One immediate result of the strategic planning session is the addition of

the words " education " and " diagnosis " to the UMDF Mission Statement:

TO PROMOTE RESEARCH AND EDUCATION FOR THE DIAGNOSIS, TREATMENT AND CURE OF

MITOCHONDRIAL DISORDERS AND TO PROVIDE SUPPORT TO AFFECTED INDIVIDUALS AND

FAMILIES

UMDF Committees are also in the process of being re-structured with new

members being sought to serve.

Meetings are already taking place to ensure another successful symposium in

St. Louis on June 15-18, 2005.

UMDF has brought aboard a new staff member, Mark as CFO, to help

address the accounting needs of UMDF.

UMDF Chairman, Chuck Mohan, will be filling in as interim executive director

helping to ensure a smooth transition to UMDF's next level of success.

The " quest " toward the cure continues!

Chuck Mohan

Life isn't a matter of milestones,

But of moments.

Rose Kennedy