Page 15 - 2020 Summer CMTA Report

Pru and Louis Ryan

also liked the fact that the CMTA thing about this package is that aplomb and hearing aids that
has the highest possible rating, developing protocols to prove connect to her cell phone and
4 Stars, on Charity Navigator. effectiveness will benefit all forms televisions.
The couple’s latest gift is not of CMT,” Louis said. The couple will celebrate
uniquely focused on Pru’s specific Pru is now retired from her 50 years of marriage this fall.
variant, but the Ryans wanted to career as a paralegal and Louis Pru says that Louis’ strength and
make sure that MPZ H39P—one from his position as general coun- creative, out-of-the box thinking
of the more common variants— sel of a media company, but they have helped her endure while his
was included in the research continue to be involved with vari- “interest in, passion about and
package they’re helping fund. ous not-for-profit organizations, thoughtful attention to philan-
“It only makes sense to research both as board members and thropy have had a profound effect
something that affects more peo- donors. Pru has some hearing loss on me and have helped guide
ple,” Louis said, but at the same in addition to the muscle wasting my philanthropic decisions.”
time the CMTA can help patients and weakness in her hands and They have both helped move
focus their giving. “The exciting legs, but she handles it with the needle for the CMTA. h

CMTA CENTERS OF EXCELLENCE

www.cmtausa.org/coe

CMTA CENTERS OF EXCELLENCE are patient-centric, CMTA CENTER OF EXCELLENCE CLINICAL DIRECTOR
multidisciplinary CMT clinics where children, adults and Cedars-Sinai Medical Center (Los Angeles)...................................Drs. Robert Baloh and Richard Lewis
Children’s Hospital of Philadelphia (Philadelphia)..........................Dr. Sabrina Yum
families affected by CMT can be assured of receiving Children’s Hospital of Pittsburgh (Pittsburgh)*.............................Dr. Hodas Abdel-Hamid
comprehensive care by a team of CMT experts. The Centers Children’s National Hospital (Washington, DC)*............................Dr. Diana Bharucha-Goebel
roughly correspond to the 21 international sites that make up Connecticut Children’s Medical Center (Farmington).....................Dr. Gyula Acsadi
Hospital for Special Care* (New Britain, CT).................................Dr. Kevin J. Felice
the NIH Inherited Neuropathies Consortium (INC)—a group of Johns Hopkins University (Baltimore)...........................................Dr. Thomas Lloyd
academic medical centers, patient support organizations and Kane Hall Barry Neurology (Dallas/Fort Worth)* ...........................Dr. Sharique Ansari
clinical research resources sponsored in part by the CMTA. Lucile Packard Children’s Hospital at Stanford (Palo Alto)............Drs. John Day and Ana Tesi Rocha
Massachusetts General Hospital (Boston).....................................Dr. Reza Seyedsadjadi
The centers will become even more important as the CMTA Nationwide Children's Hospital (Columbus)*..........................................Dr. Zarife Sahenk
begins clinical trials, which will depend on how much we Nemours Children’s Hospital (Orlando).........................................Dr. Richard Finkel
Northwestern Memorial Hospital (Chicago)*.................................Dr. Daniela Maria Menichella
know about the “natural history” of CMT—how different Ohio State University (Columbus) .................................................Dr. Amro Stino
types of CMT progress over time and whether novel Oregon Health & Science University (Portland)*...........................Dr. Chafic Karam
medications are slowing the course of the disease. Much of Rush University (Chicago)*...........................................................Dr. Ryan D. Jacobson
Stanford Neuroscience Health Center (Palo Alto) .........................Dr. John Day
that information will be supplied by the Centers of Excellence. University of California (San Francisco)* ......................................Dr. Alex Fay
University of Florida (Gainesville)*................................................Dr. James Wymer
University of Illinois at Chicago (Chicago)*...................................Dr. Charles K. Abrams
University of Iowa (Iowa City) ......................................................Dr. Michael Shy
University of Miami (Miami)..........................................................Dr. Mario Saporta
University of Michigan (Ann Arbor)*.............................................Dr. Dustin Nowacek
University of Minnesota (Maple Grove) ........................................Dr. David Walk
University of Missouri (Columbia).................................................Dr. Raghav Govindarajan
University of North Carolina (Chapel Hill)*....................................Dr. Rebecca Traub
University of Pennsylvania (Philadelphia) .....................................Dr. Steven Scherer
University of Pittsburgh Medical Center (Pittsburgh)*..................Dr. Sasha Zivkovic
University of Rochester (Rochester, NY) ......................................Dr. David Herrmann
University of Texas Southwestern (Dallas)* ..................................Drs. Susan Iannaccone and Diana Castro
University of Utah (Salt Lake City).................................................Dr. Russell Butterfield
University of Washington (Seattle)................................................Dr. Michael Weiss
Washington University SOM St. Louis (St. Louis)*.......................Dr.Stefanie Geisler
Wayne State University (Detroit) ...................................................Dr. Jun Li
*These Centers of Excellence are not part of the INC.
INTERNATIONAL
The Children’s Hospital (Westmead, Australia)..............................Dr. Manoj Menezes
The National Hospital for Neurology
& Neurosurgery (London, England) ..............................................Dr. Mary Reilly
C. Besta Neurological Institute (Milan, Italy) .................................Dr. Davide Pareyson
University of Antwerp (Edegem, Belgium).....................................Dr. Jonathan Baets

SUMMER 2020 THE CMTA REPORT 15