Page 14 - 2021 Winter CMTA Report

INNERVATORS

WHY I GIVE:

For anyone thinking of donating to the
ACCORDING TO THE DICTIONARY,
an innervator is a nerve stimulator. According to the
CMTA, an INNERVATOR is an action-oriented donor CMTA or its STAR research program,
who gives monthly to the organization, sustaining Howard Landis has four simple words
STAR (Strategy to Accelerate Research), our premier
research initiative, as well as important community of advice: “Now is the time.”
initiatives like Camp Footprint, Patient/Family
Conferences and educational programs. All of these Howard has a late-onset their genome sequenced may
programs require steady, reliable support from
form of CMT 2 for which the cul- have hundreds of disease-caus-
committed donors. Please join the Innervators today!
www.cmtausa.org/cmta-innervators prit gene has not yet been ing mutations, Howard
identified, but the fact that the explained. Most of these variants
exact cause hasn’t yet been are harmless—everyone has
Tracy Adamson Mr. and Mrs. Ryan Meloni
Scott Allen Ronnie Mendoza pinned down doesn’t stop him thousands of mutations—and
Brendan Bennett Mr. and Mrs. Jacob Mersing from getting involved and giving. determining which one is not is
Lorna Brand William Millar
As he noted, “The research com- the challenge. The challenge is
Dr. and Mrs. William Buchanan Mrs. Susan Moore
munity is doing its part and is much easier if there is a second
Cynthia Carroll Ms. Alba Moratinos
William Chandler Ms. Cara Natale making tremendous advances. and a third patient, who might
Peter Cherpes David Nelson
Now is the time to join the be halfway across the world, with
David Coldiron Gary Oelze
CMTA in supporting them with the same mutation. “It is a gross
Peter Cole Mr. and Mrs. Pamela Palmer
James Copeland Jeannie Palmero your contributions, and now is oversimplification to say that
John Cordonnier Jonathan Preston the time to have your genome identifying culprits is a numbers
Diane Covington Susan Rems
sequenced if you have an game, but there is a sense in
Grace Dipisa Raymond Roth
Ms. Marilynn Dodge Mrs. Margery Sayward unidentified form of CMT. Your which this is true,” Howard
Mitchell Fedde Mr. and Mrs. Mario Scacco funds and your genomes will explained. He noted that the
Mr. and Mrs. Rick Fansler Donald Schlosser
undoubtedly make a difference.” Genesis Project faces a number
Mrs. Arya Fritz Bruce Spackman
Howard is particularly inter- of barriers—i.e., many people
Tim Garmager Joyce Steinkamp
Mr. and Mrs. Stephen Giles Mr. and Mrs. Jim Stetor ested in the work that Dr. with unidentified forms of CMT
Amy Gray Mrs. Barbara Stuck
Stephan Züchner is doing on do not know that they have the
Mr. and Mrs. Jay Grife Brett Taylor
unidentified Type 2s at the Gen- disease and many who have been
Diane Gross Mrs. Patricia Tedford
Randy Gunn David Thomas esis Project at the University of diagnosed have not had their
Mr. and Mrs. William Helmke Mr. and Mrs. Ophir Trigalo Miami. Genesis, a cloud-based genome or exome sequenced. In
Diann Jackson Payton Turner
database designed for storing addition, some researchers and
Mark Johnsen Lynn Upton
Doug Kampe Angela Vandersteen and analyzing genomic data, companies don’t wish to share
Heather Kercher Bruce Vieira recently identified a new form of their data.
Drs. Craig and Andrea Kesack Steve Williard
CMT affecting an estimated Breaking down these barri-
Ella Lafara Robert Wills
3,000 people in the United ers is more important than ever
Jennifer Larkin Daniel Woltjer
Rosemarie Littleton States. Howard is on the board given the progress being made
of Genesis, which is available to with gene therapy and other
the worldwide research commu- treatments, Howard said, noting
“I am an Innervator because I know the
nity, making the challenge of that the Genesis researchers who
budgetary challenges nonprofits face in
identifying culprit genes easier. recently located a new gene also
terms of planning. So often the bulk of
giving occurs late in the fourth quarter. With more genomes and exomes identified an existing medication
If enough people provide monthly giving from CMT patients available to that will treat and possibly cure
over the course of the year, it will provide researchers, the research com- the disease. “That sort of thing
the CMTA with the stable funding it
munity could identify many just wasn’t possible even five
needs to fulfill its mission of ridding the
more forms of CMT. years ago,” he added.
world of this affliction.” —David Coldiron
Individuals with an uniden- Howard’s own CMT journey
tified form of CMT who have was different than most. He had
14 THE CMTA REPORT WINTER 2021