Robin Marshall: She came home from a day of work, and only Jan would say this, I came
across the worst thing that could ever happen to a family and their child.
Can you imagine what it would be like to have a child and get notified that your child was
going to be pre-programmed to get all of these issues and will die at an earlier age.
I cannot imagine that.
Dr. Francomano: Alstrom Syndrome is one of the most rare of the genetic disorders and
it's a devastating condition.
It's a condition that affects affected children's eyesight, their hearing, their kidneys, their
livers, their hearts.
They develop diabetes.
Many people who are affected by it, call it the monster.
Dr. Francomano: Jan was the driving force behind Alstrom Syndrome International.
And she and Robin just became incredibly dedicated to this effort.
It really became their life's work.
Anne Nordstrom: Jan discovered literally five families when she was doing research for something
else and created this huge network of scientists, researchers, families, friends and supporters
around the world.
Jan had such a passion and a care for everybody.
Tony Jackson: It was palatable, it was contagious.
It was Jan's life and once you got started, you didn't stop.
Ken Paigen: The first thing that she did that was so important, was recognizing that there
had to be more people around the world.
And to begin to collect the cases and to begin to build the group and then to bring people
together.
She understood how important that was.
Dr. Francomano: She knew every single child, she knew them inside and out.
Robin Marshall: Even to the extent that she knew the birthdays of the siblings.
In her head.
Dr. Francomano: She made connections between the families and the support group really
grew out of those connections.
Robin Marshall: The opportunity to meet another child, for a parent to meet another parent,
because nobody gets it.
It's impossible to get.
How else has to deal with that complicated an issue.
Gina Denbow: The first conference we attended was in 2006 and at that time I had been in
contact with a couple of Alstrom parents, moms, and had spoken to them but had never
seen another Alstrom child.
And so when I arrived and looked around the room for the very first time with my little
girl, I can see her life flash before my eyes.
There she was when was going to be eight.
That's what she looked like when she was 10, and there she was as a teenager and as an
adult and was able to talk about it and share experiences and stories.
Dr. Francomano: Robin has carried on the effort, bringing the patients together and providing
that glue to help people through their ordeal.
Robin Marshall: All I know is their quality of life is better for the work that we do.
I can see so many different possibilities for five years from now and 10 years from
now.
Ken Paigen: The hope, the future, it's really pretty bright.
DNA sequencing is dramatically changed, that the rate that which we are acquiring new knowledge
in biomedical research is doubling roughly every two to three years.
Jan Marshall: Our first speaker this morning, I have to tell you something, I first met
Clair when she was a mere child and a summer student in our lab at Jackson Laboratory and,
believe it or not, it was 45 years ago and so she has been with the Alstrom Syndrome
cause since the beginning and we love her and she's ...
Dr. Francomano: I've know Jan Marshall since 1971 so to have the Jan D. Marshall Center
means everything to me.
It's just a wonderful honor and I'm so, so pleased that we're doing this.
Gina Denbow: If she hadn't, at some point in time, decided that this was something important,
and reached out to us, then I don't know where we would be.
Katelyn Denbow: She was Super Woman.
Gina Denbow: She is the Alstrom Mom.
Katelyn Denbow: You have to push boundaries, find new ways to do things because not everything
is as simple for some people as it is for others.
If you don't try hard enough, you're not going to get anywhere in life.
Tony Jackson: She would end almost every email that she ever sent me with one simple word,
onward.
And that would be her outlook on it all.
We've done well, but we're not done yet.
Onward, we have to keep going.
That's exactly what she would have done.
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