Special Advisors
 
Dr. Stephen Kron

Chair-Science Advisors

University of Chicago 

 

Laura Goff
Chair-Finance Committee
Deloitte Tax LLP
 
Neil Hirsch
Chair-Development Comm.
Judy Hirsch Foundation

 

Peter Kupferberg
Co Chair-Development Comm.
Gofen and Glossberg

 

Michael L. Lucas
Chair-Corporate Foundation Advancement 
 Leading Edge Investment Advisors
 
Dr. Alana Baum
Chair-Jasper Against Batten Fund

 

Lisa Kelly
Chair-Dogs for Cures Foundation

 

Scott Rothrock
Chair-Cure for MS Fund

 

Mark Weinberg
Chair-CRAVAT Foundation

 

 

Founders

 

George Goldman
Asset Partners

  

Judith A. Goldman
Goldman Philanthropic Partnerships
 

 

Senior Staff
 
Dr. Bruce Bloom
President and Chief Science Officer

 

We just got this update from Dr. David Teachey, our ALPS researcher who has saved the lives of thousands of kids with this blood disorder thanks to PFC support.

"I thought I would give an update on the rapamycin trial. It is going very well and have had many success stories with many ALPS patients that have had their lives completely changed. One of my favorite parts is when a doctor has been treating a patient with ALPS for years with no success and then starts rapamycin and emaiIs me in a week or two at how amazed they are with the drug response.
 
I received a recent email from a clinician about a child with severe ALPS, including a huge and painful spleen and severe reduction in red and white blood cells and platelets, despite multiple immune suppressants.   The clinician wrote that after only two weeks on rapamycin, 'It was amazing seeing her today. Her spleen is half the size and she looked great. I will send all labs when they are all back but all her blood cells were remarkably better, which is amazing.' Her counts are normal and spleen is almost normal in size now.
 

I have recently branched outside of ALPS with rapamycin and I am seeing remarkable results.
 
I got an email from a parent today, which made me think of PFC.  Her daughter has chronic low platelets that no other treatment helped and the child has been extremely limited in her activities because of clotting problems this has caused.  She may be a pre-lupus patient based on some autoantibodies, although her only clinical finding is low platelets. Within 2 weeks of starting rapamycin she had a normal platelet count!  Her autoantibodies went away, which also surprised us.  Her mother said, 'She seems to be doing great. She is playing field hockey and feeling great. She is really happy. We are so happy to have met you and have her on this treatment! It is changed her life! Thanks!'

 

Thanks to all the PFC donors for your support.  Look what we've done together using Rediscovery Research™!"
 
David T. Teachey, MD
Assistant Professor of Pediatrics
Divisions of Hematology and Oncology
Blood and Marrow Transplant
Children's Hospital of Philadelphia
University of Pennsylvania, School of Medicine

      Updates for some of our Rediscovery Research™ projects

Myelodyplastic syndrome: Drs. Seth Corey (Children's Memorial) and Amit Verma (Albert Einstein) are working on independent Rediscovery Research™ projects repurposing existing drugs to treat a rare variant of this blood disorder supported by a private family funding group.

Batten Disease: Our Jasper Against Batten Fund is supporting Drs. Beverly Davidson (U of Iowa) and Jeff Kordower (Rush Medical Center), who are working together on a gene therapy project, and Dr. Steve Gray (U of North Carolina) is working independently on a gene therapy project.  Dr. David Sullivan (Hopkins) is completing a Batten drug screening project.  Dr. Jon Cooper (Kings College-London) is breeding a mice colony with Batten Disease for future research.

Diabetes: Friends United is funding a Phase II human clinical trial sponsored by the Exsulin Corporation at the Mayo Clinic and McGill University. Exsulin is the first and only islet regeneration therapy in Phase II development.  Friends United also sponsored the recently completed human clinical trial of Dr. Denise Faustman (Harvard) and we will be participating in Phase II. 
the Press Release. 

                                Research updates on our website.

The 2010 Longest Day of Golf-Rockford was a huge success! 
 
Golfers played from 7:30 am until 7:30 pm on a beautiful sunny August 11 at Silver Ridge Golf Course in Oregon, IL to raise funds for Rediscovery Research™

Our heartfelt thanks to the golfers and their friends, their business contacts and their family members who support this fundraising event every year. Special thanks to Board members Jerry and Connie Paris who provided the volunteer support to make this a spectacular event.

 

Pictures of the rainbow that welcomed us to the course as we started our day!

Congratulations to Mahsa Rezaei, an outstanding PFC science intern, who was recently accepted to Rosalind Franklin Medical School here in Chicago.  Mahsa did a great job helping us find Rediscovery Research™ and reviewing other critical information. Mahsa just graduated from the University of Illinois and was a research assistant on campus.  Good luck, Mahsa - we are very proud of you!