Re: Memo from Memphis: Foundation Meeting

[Guest guest]

Way to go

. Anything you can share about Worth’s current care and how his PSC

is doing? I am so curious with Noah headed to the rheumatologist. Not that I

expect them to pull out the Remicade the first day, but I would like to keep it

on the table if it is something we could benefit from for the UC/Crohn’s

not to mention the PSC and of course the primary indication of the RA which he

might now have. (Please let it be something much less benign.)

I can’t

wait to hear what the recommendations are from the s. I am all over

helping in any way possible. Tell me what to do.

Blessings to

you for all you do,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

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[Guest guest]

Way to go

. Anything you can share about Worth’s current care and how his PSC

is doing? I am so curious with Noah headed to the rheumatologist. Not that I

expect them to pull out the Remicade the first day, but I would like to keep it

on the table if it is something we could benefit from for the UC/Crohn’s

not to mention the PSC and of course the primary indication of the RA which he

might now have. (Please let it be something much less benign.)

I can’t

wait to hear what the recommendations are from the s. I am all over

helping in any way possible. Tell me what to do.

Blessings to

you for all you do,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Way to go

. Anything you can share about Worth’s current care and how his PSC

is doing? I am so curious with Noah headed to the rheumatologist. Not that I

expect them to pull out the Remicade the first day, but I would like to keep it

on the table if it is something we could benefit from for the UC/Crohn’s

not to mention the PSC and of course the primary indication of the RA which he

might now have. (Please let it be something much less benign.)

I can’t

wait to hear what the recommendations are from the s. I am all over

helping in any way possible. Tell me what to do.

Blessings to

you for all you do,

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Hi ;

Many of us have read Worth's story at:

http://www.pscfoundation.org/worth.html

The Remicade infusions have indeed been working really well for him;

he's recently had to increase their frequency because of a flare of

Crohn's disease, but his PSC and Crohn's both now seem to be under

control. As I mentioned earlier, Gene Whitington and Dennis Black

are eager to start a multi-center clinical trial on Remicade in PSC

as part of the STOPSC registry.

After I've shared the advice of the Foundation scientific

advisory board with the PSC Partners Seeking a Cure board [work in

progress], I'll be happy to forward all the details to our members.

But the gist of the advice was .... DO continue with our excellent

educational efforts, and try to grow membership. Also think

carefully about ways to increase visibility for PSC Partners Seeking

a Cure [e.g. give a small prize for best PSC research at a national

liver meeting]. We won't be able to fund large research projects at

the moment, but perhaps we could make a difference by funding the

research (supplies and expenses) of some " fellows " working in the

laboratories of established PSC researchers? These are some of the

excellent ideas that were offered.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Hi ;

Many of us have read Worth's story at:

http://www.pscfoundation.org/worth.html

The Remicade infusions have indeed been working really well for him;

he's recently had to increase their frequency because of a flare of

Crohn's disease, but his PSC and Crohn's both now seem to be under

control. As I mentioned earlier, Gene Whitington and Dennis Black

are eager to start a multi-center clinical trial on Remicade in PSC

as part of the STOPSC registry.

After I've shared the advice of the Foundation scientific

advisory board with the PSC Partners Seeking a Cure board [work in

progress], I'll be happy to forward all the details to our members.

But the gist of the advice was .... DO continue with our excellent

educational efforts, and try to grow membership. Also think

carefully about ways to increase visibility for PSC Partners Seeking

a Cure [e.g. give a small prize for best PSC research at a national

liver meeting]. We won't be able to fund large research projects at

the moment, but perhaps we could make a difference by funding the

research (supplies and expenses) of some " fellows " working in the

laboratories of established PSC researchers? These are some of the

excellent ideas that were offered.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Hi ;

Many of us have read Worth's story at:

http://www.pscfoundation.org/worth.html

The Remicade infusions have indeed been working really well for him;

he's recently had to increase their frequency because of a flare of

Crohn's disease, but his PSC and Crohn's both now seem to be under

control. As I mentioned earlier, Gene Whitington and Dennis Black

are eager to start a multi-center clinical trial on Remicade in PSC

as part of the STOPSC registry.

After I've shared the advice of the Foundation scientific

advisory board with the PSC Partners Seeking a Cure board [work in

progress], I'll be happy to forward all the details to our members.

But the gist of the advice was .... DO continue with our excellent

educational efforts, and try to grow membership. Also think

carefully about ways to increase visibility for PSC Partners Seeking

a Cure [e.g. give a small prize for best PSC research at a national

liver meeting]. We won't be able to fund large research projects at

the moment, but perhaps we could make a difference by funding the

research (supplies and expenses) of some " fellows " working in the

laboratories of established PSC researchers? These are some of the

excellent ideas that were offered.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Do you know which centers will be contributing information to this registry? I'm curious if University of Minnesota Medical will be. Ami wrote: Dear All,I had a very interesting and stimulating meeting with the Foundation on June 29 and 30. I was honored to serve as the representative of PSC Partners Seeking a Cure, and have dinner with Musette and , and their son, Worth, and the scientific advisory board of the

Foundation, on June 29. You really have to take your hat off to Musette and for what they are doing for PSC research. They are literally spending millions of dollars to finding the causes and cures of this disease! They are very pleased that PSC Partners Seeking a Cure is interested in many of the same goals as the Foundation, and their new STOPSC registry, and that we are beginning to form a partnership. I've been asked to serve on the Foundation's scientific advisory board, and Dr. Dennis Black will serve on the scientific advisory board of PSC Partners Seeking a Cure. This will ensure that we don't duplicate efforts, and that our organizations can be complementatry to one another. I think that we should be extremely grateful that we now a voice on the Foundation scientific advisory board.At the meeting of the Foundarion scientific advisory board on June 30 [unfortunately

the family could not attend this meeting because they were having lunch with President Bush and the Prime Minister of Japan in downtown Memphis], Dr. Dennis Black listed 4 major accomplishments of the Foundation since 2005:1. The PSC Research Conference in Bethesda, MD in September, 2005. A report of this conference is due to appear in Hepatology in a month or so. Several members of the Foundation scientific advisory board are authors of this report. 2. Establishment of the North American Adult and Pediatric PSC Registry (STOPSC), due to open in August 2006. The STOPSC registry is probably the single most important development in the history of this disease. It will cost $800,000 to $1,000,000 to operate per year, and this cost is currently being paid entirely by . It will bring together PSC patient records, history and tissue, from multiple centers into a single

database/repository that will allow approved investigators to make much more rapid progress in answering questions about the epidemiology, patient characteristics and genetics of PSC. It will enable new multicenter clinical trials such as the use of infliximab (Remicade) to treat PSC. This STOPSC registry has now become the major focus of the Foundation.3. Foundation Research Grants. The Foundation has awarded $400,000 in research grants to 5 projects. They expect to award another $400,000 in renewals for these 5 projects.4. Partnership with PSC Partners Seeking a Cure. I gave a brief overview of the history of our organization and our accomplishments in the areas of education and fundraising. I briefly outlined our tentative plan to begin funding research on PSC. I was given some excellent advice as to where our organization might get the most "bang" for its "buck", and I'll share these

ideas with our board. The scientific advisory board of the Foundation was very pleased with our progress to date, and expressed enthusiasm for our partnership.Best regards,Dave (father of (21); PSC 07/03; UC 08/03)

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[Guest guest]

Do you know which centers will be contributing information to this registry? I'm curious if University of Minnesota Medical will be. Ami wrote: Dear All,I had a very interesting and stimulating meeting with the Foundation on June 29 and 30. I was honored to serve as the representative of PSC Partners Seeking a Cure, and have dinner with Musette and , and their son, Worth, and the scientific advisory board of the

Foundation, on June 29. You really have to take your hat off to Musette and for what they are doing for PSC research. They are literally spending millions of dollars to finding the causes and cures of this disease! They are very pleased that PSC Partners Seeking a Cure is interested in many of the same goals as the Foundation, and their new STOPSC registry, and that we are beginning to form a partnership. I've been asked to serve on the Foundation's scientific advisory board, and Dr. Dennis Black will serve on the scientific advisory board of PSC Partners Seeking a Cure. This will ensure that we don't duplicate efforts, and that our organizations can be complementatry to one another. I think that we should be extremely grateful that we now a voice on the Foundation scientific advisory board.At the meeting of the Foundarion scientific advisory board on June 30 [unfortunately

the family could not attend this meeting because they were having lunch with President Bush and the Prime Minister of Japan in downtown Memphis], Dr. Dennis Black listed 4 major accomplishments of the Foundation since 2005:1. The PSC Research Conference in Bethesda, MD in September, 2005. A report of this conference is due to appear in Hepatology in a month or so. Several members of the Foundation scientific advisory board are authors of this report. 2. Establishment of the North American Adult and Pediatric PSC Registry (STOPSC), due to open in August 2006. The STOPSC registry is probably the single most important development in the history of this disease. It will cost $800,000 to $1,000,000 to operate per year, and this cost is currently being paid entirely by . It will bring together PSC patient records, history and tissue, from multiple centers into a single

database/repository that will allow approved investigators to make much more rapid progress in answering questions about the epidemiology, patient characteristics and genetics of PSC. It will enable new multicenter clinical trials such as the use of infliximab (Remicade) to treat PSC. This STOPSC registry has now become the major focus of the Foundation.3. Foundation Research Grants. The Foundation has awarded $400,000 in research grants to 5 projects. They expect to award another $400,000 in renewals for these 5 projects.4. Partnership with PSC Partners Seeking a Cure. I gave a brief overview of the history of our organization and our accomplishments in the areas of education and fundraising. I briefly outlined our tentative plan to begin funding research on PSC. I was given some excellent advice as to where our organization might get the most "bang" for its "buck", and I'll share these

ideas with our board. The scientific advisory board of the Foundation was very pleased with our progress to date, and expressed enthusiasm for our partnership.Best regards,Dave (father of (21); PSC 07/03; UC 08/03)

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[Guest guest]

Do you know which centers will be contributing information to this registry? I'm curious if University of Minnesota Medical will be. Ami wrote: Dear All,I had a very interesting and stimulating meeting with the Foundation on June 29 and 30. I was honored to serve as the representative of PSC Partners Seeking a Cure, and have dinner with Musette and , and their son, Worth, and the scientific advisory board of the

Foundation, on June 29. You really have to take your hat off to Musette and for what they are doing for PSC research. They are literally spending millions of dollars to finding the causes and cures of this disease! They are very pleased that PSC Partners Seeking a Cure is interested in many of the same goals as the Foundation, and their new STOPSC registry, and that we are beginning to form a partnership. I've been asked to serve on the Foundation's scientific advisory board, and Dr. Dennis Black will serve on the scientific advisory board of PSC Partners Seeking a Cure. This will ensure that we don't duplicate efforts, and that our organizations can be complementatry to one another. I think that we should be extremely grateful that we now a voice on the Foundation scientific advisory board.At the meeting of the Foundarion scientific advisory board on June 30 [unfortunately

the family could not attend this meeting because they were having lunch with President Bush and the Prime Minister of Japan in downtown Memphis], Dr. Dennis Black listed 4 major accomplishments of the Foundation since 2005:1. The PSC Research Conference in Bethesda, MD in September, 2005. A report of this conference is due to appear in Hepatology in a month or so. Several members of the Foundation scientific advisory board are authors of this report. 2. Establishment of the North American Adult and Pediatric PSC Registry (STOPSC), due to open in August 2006. The STOPSC registry is probably the single most important development in the history of this disease. It will cost $800,000 to $1,000,000 to operate per year, and this cost is currently being paid entirely by . It will bring together PSC patient records, history and tissue, from multiple centers into a single

database/repository that will allow approved investigators to make much more rapid progress in answering questions about the epidemiology, patient characteristics and genetics of PSC. It will enable new multicenter clinical trials such as the use of infliximab (Remicade) to treat PSC. This STOPSC registry has now become the major focus of the Foundation.3. Foundation Research Grants. The Foundation has awarded $400,000 in research grants to 5 projects. They expect to award another $400,000 in renewals for these 5 projects.4. Partnership with PSC Partners Seeking a Cure. I gave a brief overview of the history of our organization and our accomplishments in the areas of education and fundraising. I briefly outlined our tentative plan to begin funding research on PSC. I was given some excellent advice as to where our organization might get the most "bang" for its "buck", and I'll share these

ideas with our board. The scientific advisory board of the Foundation was very pleased with our progress to date, and expressed enthusiasm for our partnership.Best regards,Dave (father of (21); PSC 07/03; UC 08/03)

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[Guest guest]

Dear Ami;

The 12 participating centers in the STOPSC registry initially are:

1. Children's Hospital Boston – Boston, MA

2. Children's Memorial Hospital – Chicago, IL

3. Harvard Medical School – Boston, MA

4. Hospital for Sick Children, Toronto – Toronto, Ontario, Canada

5. LeBonheur Children's Medical Center – Memphis, TN

6. Mayo Clinic – Rochester, MN

7. Mount Sinai School of Medicine – New York, NY

8. Tufts University School of Medicine – Boston, MA

9. University of California, San Francisco – San Francisco, CA

10. University of Cincinnati – Cincinnati, OH

11. University of Colorado – Denver, CO

12. Virginia Commonwealth University – Richmond, VA

They would obviously like to increase the number of centers in the

future, but they feel that 12 is enough to start with, without being

overwhelmed.

More information about STOPSC can be found at:

https://web.emmes.com/study/psc/about/about.html

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

>

> Do you know which centers will be contributing information to this

registry? I'm curious if University of Minnesota Medical will be.

>

> Ami

>

[Guest guest]

Dear Ami;

The 12 participating centers in the STOPSC registry initially are:

1. Children's Hospital Boston – Boston, MA

2. Children's Memorial Hospital – Chicago, IL

3. Harvard Medical School – Boston, MA

4. Hospital for Sick Children, Toronto – Toronto, Ontario, Canada

5. LeBonheur Children's Medical Center – Memphis, TN

6. Mayo Clinic – Rochester, MN

7. Mount Sinai School of Medicine – New York, NY

8. Tufts University School of Medicine – Boston, MA

9. University of California, San Francisco – San Francisco, CA

10. University of Cincinnati – Cincinnati, OH

11. University of Colorado – Denver, CO

12. Virginia Commonwealth University – Richmond, VA

They would obviously like to increase the number of centers in the

future, but they feel that 12 is enough to start with, without being

overwhelmed.

More information about STOPSC can be found at:

https://web.emmes.com/study/psc/about/about.html

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

>

> Do you know which centers will be contributing information to this

registry? I'm curious if University of Minnesota Medical will be.

>

> Ami

>

[Guest guest]

Dear Ami;

The 12 participating centers in the STOPSC registry initially are:

1. Children's Hospital Boston – Boston, MA

2. Children's Memorial Hospital – Chicago, IL

3. Harvard Medical School – Boston, MA

4. Hospital for Sick Children, Toronto – Toronto, Ontario, Canada

5. LeBonheur Children's Medical Center – Memphis, TN

6. Mayo Clinic – Rochester, MN

7. Mount Sinai School of Medicine – New York, NY

8. Tufts University School of Medicine – Boston, MA

9. University of California, San Francisco – San Francisco, CA

10. University of Cincinnati – Cincinnati, OH

11. University of Colorado – Denver, CO

12. Virginia Commonwealth University – Richmond, VA

They would obviously like to increase the number of centers in the

future, but they feel that 12 is enough to start with, without being

overwhelmed.

More information about STOPSC can be found at:

https://web.emmes.com/study/psc/about/about.html

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

>

> Do you know which centers will be contributing information to this

registry? I'm curious if University of Minnesota Medical will be.

>

> Ami

>

[Guest guest]

Dear Dave,

As per usual, thank you so much for the hard work that you do for PSC. I think we are all indebted to you. I can't think of a better person to be our link to the Foundation. Sounds like it was an interesting conference. The registry sounds very worthwhile.

I hope is doing well.

Kind regards to Judy.

Ali

Ali Lingerfelt-Tait

180 Blackberry Inn Rd

Weaverville, NC 28787

828 658-8019

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