Progress :-)

Thought this was worthy of entering, as it is exciting news for those of us w/ the disease and caregivers.

Dear ECD Global Alliance Members,

I wanted to share with you some of the hopeful things that are happening within the organization.
In the past couple weeks we have been contacted by three different research teams interested
in beginning new research studies on ECD.
One team represents a group of doctors we have been talking with for some time about getting
an ECD research project started. Last week we saw definite movement toward that goal.
The other two teams have contacted the ECD Global Alliance, unsolicited, to ask if our organization
would be willing to collaborate on a possible ECD study. Of course the answer was a resounding,
“Yes.” It might be that collaborations will be formed between two or more of these teams to
form fewer, yet stronger, studies. All of the proposals being considered are geared toward
learning more about ECD as opposed to clinical trial type studies.
We also hosted an ECD Global Alliance Medical Review Board this week.
It was very uplifting to listen to these ECD knowledgeable doctors talk about their work and
ideas related to ECD research. This group of doctors is certainly interested in learning more
about ECD so as to have the most effective and rational treatments available.
As all this is happening we are also making preparations to communicate out to the world that
we are prepared to award an ECD research grant of our own.
None of us can predict where all of this discussion will lead. Any studies that come to fruition
will take time, and it is impossible to know how many studies might be needed before meaningful
advances in the understanding of ECD can be achieved and translated into better treatments.
However, the fact is that researchers are interested in learning more about ECD, and since there
is now an accessible patient population available in the form of our organization, more possibilities
exist. This is all very promising and shows that “Together we can make a difference.”
Thank you for being part of the organization. Because of you all this is possible. If you are
interested in participating in a possible future study and wonder what you might do, the best thing
at this time is to gather together your medical information, including reports and CDs of scans,
biopsy reports, test dates, etc. If you need any help in doing this, please contact the organization
at this email address and we will do our best to guide you through the process.

This was sent to our members by Kathy, our fearless leader.