Wednesday, August 8, 2012

Debra PCC 2012 ~ Quotes & Paraphrases ~ Blog #2

Originally I was going to try and write a couple of blogs regarding all the information that was presented to us at the 2012 debra PCC. However, considering the time restraints I am usually under I figured we can leave it up to debra and their media relations team to roll out the videos (hopefully on YouTube) of the conference. However, below are some of the quotes and phrases I heard at the PCC that grabbed my attention and reminded me of the immense gratitude I have towards our special world. While EB it's the "worst disease you've never heard of" it has brought with it an amazing group of people (from those afflicted by EB to their caregivers to the medical professionals).

To repeat what I have already said the day after the PCC was over:
"DebRa/PCC #5 Takeaway ~ the research that was just a theory in Palo Alto, Nashville, Denver & Cincinnati is now underway, the treatment & QOL for our loved ones with EB is progressively being challanged by the medical/manufacturing/caregiver community w/positive results & the EXPLOSION & MOMENTUM of cutting edge research is now extremely tangible. While all of this feeds our physical state of mind the sideline conversations & camaraderie is what feeds my soul! Together they keep me STRONG for whatever tomorrow will bring for my precious daughter! Until the next one! Safe travels to all!" ~ Aug 2, 2012

~*~ NOTE: I believe I have my notes inverted but I believe quote/paraphrase #1 was Dr. Wright, Dr. Azizkhan or Dr. Lane. If you remember feel free to let me know! Either way it was one where I couldn't stop laughing! As for quote/paraphrase #4 Dr. Tolar showed a side that very little doctors/scientist show at their level of experience/education! YOU GO DR. T! ~*~

1. On wanting to find the best possible direction for treating patients with EB:

“Put me out of business…PLEASE!”

–Dr. J. Timothy Wright, DDS, MS Bawden Distinguished Professor & Chair, University of North Carolina

2. Answering a parent that spoke about their medical doctor back home requiring routine dilatations on their child:

“There is no such thing as a routine surgery.”

–Dr. Richard G. Azizkhan, MD, PhD Co-Director of the EB Center at Cincinnati Children’s Hospital

3. Recommendation from a clinical psychologist regarding our outlook on EB:

“Change how you feel about the situation.”

“Disease does not define person.”

“Don’t dwell on illness.”

-Dr. Mark P. Popenhagen, Psy.D Pediatric Psychologist Dreyer Medical Clinic

4. His approach on taking on the care of an EB patient and their family through his Stem Cell/Gene Therapies:

“I have to listen to the mother…the mother always know!”

-Dr. Jakub Tolar, MD, PhD University of Minnesota
U of M - EB Website


5. Comments about our skin that has somewhat eased my mind for now for my RDEB child:

“The outer 5% of skin is the most important. Below that is where the ‘AF’ (Anchoring Fibrils) are not holding together. Our cells divide and form (3) new mutations. One out of a billion makes a mistake. Advantage is that in the bad mutation the cell falls off.”

-Dr. Alfred T. Lane, MD, MA Professor of Dermatology & Pediatrics, Stanford UniversityStandford - EB Website

6. Dr. Lane’s comments regarding Gene Therapy:

“It’s not a cure it’s research.”

“Gene Therapy aims to correct defective gene. A Virus is used to carry the gene (Gene Transfer). It puts in and turns it on.”

-Dr. Alfred T. Lane, MD, MA Professor of Dermatology & Pediatrics, Stanford University

7. Dr. Lane’s comments regarding Gene Transfer:

“Skin Biopsy ~> Grow Cell  ~> Viral Transfer ~> Epidermal Sheet Production”

“Last up to 12 months ~> FDA Approval Expiration ~>Test after several weeks (12) or months (6) = Type VII collagen positive.”

-Dr. Alfred T. Lane, MD, MA Professor of Dermatology & Pediatrics, Stanford University

8. Brett’s opening remarks regarding debra:

“You’re going to see some big changes in the near future…lots of them!”

-Brett Kopelan, Executive Director debra of America

9. Elevator conversation between two kids w/EB (Bianca & Zach) while they stared at their images in the mirror:

“I did it again looking handsome & fresh.” ~ Zach

“Yup I’m one hot looking mama.” ~ Bianca

-Zach Johnson & Bianca Contreras, Future World Changers

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