The JFF Muscle Dream Team held its 12th - Joshua Frase Foundation

Summer 2009
Professional athletes helPing to find cures for all congenital MyoPathies
The JFF Muscle Dream Team held its 12th Annual
Gala on April 2, 2009, at the Boston Harbor Hotel
Once again Boston and New York business leaders lent their
generous support to the Joshua Frase Foundation (JFF) at their
annual Muscle Dream Team Gala. Top sponsors supporting
the Gala included: Sonia and Paul T. Jones, American
Airlines, Liquidnet Holdings, Inc. and Monness, Crespi,
Hardt & Co., Inc.
Boston Harbor Hotel’s Wharf Room was transformed into
a sleek and sophisticated Grey Goose lounge. While
guests sipped on Grey Goose martinis, “the Sky was
the limit” as DJ Sky Nellor spinned all night long
for a really hot night. Chef Daniel Bruce created a
fun “sports inspired” menu that offered everything
from hamburger and cheeseburger “sliders” with
crispy fries and onion rings, to panko fried baby
scallops with tomato caper tartare.
Save the Date for the 13th Annual
JFF Muscle Dream Team Gala
Date: April 1, 2010
Location: Boston Harbor Hotel
Dream Team TimeS
Check us out on the internet!
For more information on the Joshua Frase
Foundation, check out our website:
www.joshuafrase.org
Other personalities who attended the
event included: Peter Wolf, lead singer
of the J. Geils Band; Michael Schlow,
Celebrity Chef and Restaurateur;
Dorsey Levens, Green Bay
Packers; Zak DeOssie, New
York Giants; Ben Watson,
Adalius Thomas, Laurence
Maroney, Jerod Mayo and
Brandon Merriweather,
Alex and Laura Zecca and Paul Jacques
Ben Watson, Jerod Mayo, Laurence Maroney, Kenny Smith and
Sammy Morris with William Ward
New England Patriots;
Mike Woicik, Strength
and Conditioning Coach for the New England Patriots; Jesse Palmer, former
New York Giants player, ESPN analyst and star of ABC’s fifth season of “The
Bachelor;” Shalrie Joseph, Taylor Twellman and Coach Steve Nicol of the
New England Revolution and many others.
Greg Hill, Host of WAAF’s, “The Hill-Man Morning Show,” served as
Master of Ceremonies. The auction included spectacular items such as an
NFL Pro Bowl Package, tickets to a NYC fashion show, Neiman Marcus
“Girls Day of Extravagance Package,” dinner with an NFL pro at The
Capital Grille and a trip to the luxurious La Samanna Resort in French
St. Martin with airfare provided by American Airlines.
This year’s event honored Gretchen Monahan, aka “Gretta,” owner of
Gretta Luxe, Grettacole, GSpa; Co-Host of “Tim Gunn’s Guide to Style”
and Style & Beauty Expert for “The Rachael Ray Show.” Gretta’s generous
contributions to the JFF auctions have been invaluable in raising the funds
needed to help find a cure for MTM and other neuromuscular disorders.
Over a quarter of a million dollars was raised this year for neuromuscular
disease research at Children’s Hospital Boston, Harvard Medical School and
Wake Forest Institute for Regenerative Medicine in North Carolina. Over the
past 12 years, the JFF Muscle Dream Team Gala has raised nearly $5.8 million.
Our sincere thanks to Event Co-Chairs Alex and Laura Zecca, and to the entire
2009 Gala Committee, Board of Directors and Advisory Board for their hard work.

Contact the Foundation
Interested in learning more about
the Joshua Frase Foundation or how
you can get involved with the Gala
program initiatives?
For more information please contact:
Kim Wheeler
Joshua Frase Foundation
c/o KMC Productions
222 Forbes Road, Suite 207
Braintree, MA 02184
Phone (781) 356-6616
Fax (781) 356-6617
www.joshuafrase.org
kwheeler@kmcproductions.com
Federal Tax IdenTIFIcaTIon number
59-7059890
To Our Gracious Supporters and Friends,
Since our last newsletter, a new addition has
been welcomed to our family: Nibs. Nibs is a
beautiful female Labrador Retriever from Canada
who is a genetic carrier of myotubular myopathy.
Nibs is the first large animal to be found carrying
the same gene as our son’s disorder. With complete
selflessness, Vic and Karen, Nibs’ owners, lent
us their family dog to help our son and so many
other children. It is altruistic generosity like Vic’s,
Karen’s and yours that has helped the Joshua Frase
Foundation further medical research to the point
we are at today. Our hope is that research on
DNA from Nibs and her puppies will show
success so that human trials can begin.
board oF dIrecTors
Paul Frase President, Joshua Frase Foundation
Alison Rockett Frase Vice President and Treasurer, Joshua Frase Foundation
Jeffrey M. Dixon, Esq. Secretary, Joshua Frase Foundation
Terri Dixon Trinity Christian School
Chad Hennings Former Dallas Cowboy
Daryl Johnston Former Dallas Cowboy & NFL on FOX Commentator
Elsie Rockett
Alex Zecca The Raptor Group
As exciting as the prospect of Nibs may be,
we have not yet conquered our challenge,
but are one step closer to finding a cure.
In a short time, Nibs’ DNA is helping
advIsory board
Robert C. Boucher, Jr. CEO, Synagro Technologies, Inc.
Dr. Patrick Foye Physician specializing in Physical Medicine and Rehabilitation
and CNM Parent
Sarah Foye Occupational Therapist and CNM Parent
Alison Rockett Frase Vice President and Treasurer, Joshua Frase Foundation
Greg Hill Host, WAAF, “The Hill-Man Morning Show”
Jen Hill
Ronnie Lott Former San Francisco 49er and Member of NFL Hall of Fame
Cam Neely Former Boston Bruin and Member of NHL Hall of Fame
Paulina Neely
Harry Nudelman
Jim Pallotta The Raptor Group
Kim Pallotta
Michael Schlow Executive Chef/Co-Owner, Alta Strada, Great Bay,
Radius and Via Matta
Taylor Twellman New England Revolution
Alex Zecca The Raptor Group
Laura Zecca
us understand MTM and other
congenital myopathies. With
the recent breakthroughs in
regenerative medicine research that we fund, DNA from Nibs can help us develop
therapies that may save his life and the lives of thousands of children with
congenital myopathies.
Time is running out. Every day we get closer to a cure, but we can’t do it
without your generous support. It is a miracle that Joshua is now 14, but his
health has declined dramatically over the past year and a half and this may
be our last chance to save him.
We are entering a new chapter in our journey and are so thankful to
have your support during this critical time. With new breakthroughs
in gene and muscle cell therapies and DNA from Nibs, we can
save lives. Your continued support encourages us to continue our
mission. All of you are taking a stand, making a powerful statement
and making a huge difference.
We thank you for your support. We thank you for your love.
We thank you for taking this journey with us.
God bless,
Paul, Alison, Joshua, Isabella and all the Joshua’s of the world.
To read more about this incredible breakthrough,
please turn to page 7

2009 Recipient of
the Joshua Award
2009 Joshua Award Recipient: Gretchen Monahan
The Joshua Award represents Joshua’s struggle to survive
each day and is presented to those whose lives exemplify
courage, leadership, determination, selflessness, generosity
and willingness to work towards change so that Joshua, and
the many other Joshua’s of this world battling neuromuscular
diseases, might benefit.
Paul and Alison Frase awarded the 2009 Joshua Award to
Gretchen Monahan, aka “Gretta,” owner of Gretta Luxe,
Grettacole, GSpa; Co-Host of “Tim Gunn’s Guide to Style”
and Style & Beauty Expert for “The Rachael Ray Show.”
Over the years Gretta has gone above and beyond the call
of duty to make the Joshua Frase Foundation Muscle Dream
Team Gala, the foundation’s major annual fundraiser, a huge
success. Her generous contributions to the JFF auctions have
been invaluable in raising the funds JFF needs to help find
a cure for MTM and other neuromuscular disorders. We
are indebted to and truly grateful for Gretta’s unwaivering
support. We are proud to have her on our team!
Past Recipients
2004 – Alex Zecca, First Recipient
2005 – Greg Hill, Host, WAAF,
“The Hill-Man Morning Show”
2006 – DeMatteo Monness, LLC
2007 – Chad Hennings, former Dallas Cowboy and
Daryl Johnston, NFL on FOX Commentator
2008 – Paul Jacques, The Boston Harbor Hotel
www.joshuafrase.org
2009 MTM-CNM
Family Conference
“Yes, we can!”
Yes, we can!” was the theme for the 2009 MTM-CNM
Family Conference held in Houston, TX, on July 24-26.
One hundred and twenty people, representing 33 affected
families, attended the three-day event that included a mix of
networking and education. Paul Frase kicked off the event
on Friday, sharing his personal story and the mission so dear
to the Joshua Frase Foundation.
The conference featured prominent researchers, including
Dr. Alan Beggs, who is sponsored by JFF for his amazing
work unlocking the puzzle of the congenital myopathies.
Other speakers included Dr. Christopher Pierson and Dr.
James Dowling. Families listened to medical strategies on
day-to-day care from Dr. Farber and Dr. Iannaconne. Joey
Wells, a 21-year-old who is affected by MTM, inspired
the audience during his Saturday night talk in which he
described his journey that led him to publishing a book
of poetry. Alison Frase helped close the event with a
moving speech about the important research funded by JFF,
including an appeal for all families to get involved and lend
their own support.
These lectures were heard internationally, as the event was
webcast. Glowpoint, Inc., of Hillside, NJ, donated this
service. The webcast allowed families from around the world
to connect with the MTM-CNM community at this event.
Stesha Heselius-Mashinchi ran a special program for
the siblings of affected children. Stesha believes, “The
conference was a phenomenal opportunity for siblings to
come together and create a community of understanding
and support. I am looking forward to the chance to meet and
connect with even more siblings in years to come.”
Outside the lecture hall important networking took place,
children played together and life-long friendships were
formed. It was an important and moving weekend as parents
exchanged ideas, hugs and a few tears.
3

12th Annual JFF Muscle
Dream Team Gala
April 2, 2009
The Muscle Dream Team of the Joshua Frase Foundation comes
together each April to celebrate the promise of finding a cure
for neuromuscular diseases. Established over a decade ago, JFF’s
Muscle Dream Team is dedicated to supporting the mission of the
Foundation to raise funds for medical research for the treatment of
and/or cure for neuromuscular disorders, to increase awareness of
the disease and to build a network of support for families affected
by these devastating disorders.
The Muscle Dream Team is a unique mix of NFL and MLS players
and legends and celebrities who share an interest in children’s
health. Through fundraising benefits and personal support, the
Muscle Dream Team strives to increase awareness and raise much
needed funds to continue the work of some of the world’s brightest
scientists at Children’s Hospital Boston, Harvard Medical School
and Wake Forest Institute for Regenerative Medicine.
JFF Muscle Dream Team 2009
Morten Andersen New Orleans Saints
Joe Andruzzi New England Patriots
Greg Comella New York Giants
Angelo Craig New England Patriots
Chris Eitzmann New England Patriots
Rob Davis Green Bay Packers
Zak DeOssie New York Giants
Gary Guyton New England Patriots
Greg Hill WAAF Morning Show Host
Ted Johnson New England Patriots
Shalrie Joseph New England Revolution
Max Lane New England Patriots
Mark LeVoir New England Patriots
Dorsey Levens Green Bay Packers
Laurence Maroney New England Patriots
Jerod Mayo New England Patriots
Donald McPherson Philadelphia Eagles
Brandon Merriweather New England Patriots
Sammy Morris New England Patriots
Harold Nash Assistant Strength and Conditioning Coach,
New England Patriots
Steve Nicol Head Coach, New England Revolution
Jesse Palmer New York Giants
Michael Schlow Celebrity Chef and Restaurateur
Kenny Smith Oakland Raiders
Adalius Thomas New England Patriots
Taylor Twellman New England Revolution
Rob Valentino New England Revolution
Ben Watson New England Patriots
Wes Welker New England Patriots
Mike Woicik Strength and Conditioning Coach,
New England Patriots
Peter Wolf Lead Singer, J. Geils Band
Dorsey Levens, Rob Davis and Morten Andersen
Dr. Jami Levine and Dr. Alan Beggs
Congratulations to JFF researcher, Alan H. Beggs,
PhD, on his appointment as the founding Director
of the new “Manton Center for Orphan Disease
Research at Children’s Hospital Boston.”
Dr. Beggs was recently named to the Sir Edwin
and Lady Manton Professorship of Pediatrics in
the field of Genetics at Harvard Medical School.
4 www.joshuafrase.org

On behalf of everyone at the Joshua Frase Foundation, we want to thank our generous sponsors and auction donors.
Without your support none of this would be possible.
12th Anniversary JFF Muscle Dream
Team Sponsors
Presenting Sponsors
Sonia and Paul T. Jones
MVP Sponsors
Monness, Crespi, Hardt & Co., Inc.
All-Star Sponsors
DeMatteo Monness LLC
Herb Chambers Auto
Knight Capital Group, Inc.
Hall of Fame Sponsors
Dalton Family Foundation
Nina and Gene DelFavero
Instinet, LLC
ITG – Investment Technology Group
Jacobson Family Trust
Chris and Beth Madison
Chris Pillsbury
Synagro
Special Friends of JFF
Boston Common Magazine, Glen Kelley
Boston Harbor Hotel
Boston Scene
Robert Boucher
Ed Costa
Beth Dickerson Drubner
Keith Ferdinando
Grey Goose
Kevin Hart
Tino Iantosca
Lou Imbriano
Michael Intoccia
Beth Madison
Peter Monaco
William Monness
Harry Nudelman
Christopher Pillsbury
Sullivan Worcester
Laura and Alex Zecca
www.joshuafrase.org
12th Anniversary JFF Muscle Dream Team Auction Donors
Live with Regis and Kelly”
Amelia Island Plantation
American Airlines
Amy Rader Photographer of Falmouth
John and Susan Berry, Marblehead, MA
Brad Blank
Bose® Corporation
Boston Ballet
Boston Red Sox
Terry Bradshaw
Russ Brandon, Buffalo Bills
Tedy Bruschi
Buffalo Bills Organization
Ed Costa
Joseph M. Cronin
Elle Rose Ellis at Stilisti Salon
Exhale Spa
F1 Boston
Dr. Nada Farhat
Keith Ferdinando
Fifteen Beacon Hotel
First Act Inc.
Flour Bakery + Café
Doug Flutie
David Fredrick
Green Bay Packers
Gucci
Huntington Theatre Company
Larry Izzo
Jacksonville Jaguars, Ltd
John F. Souza Photography
Jim Kelly
Kimpton Hotels & Restaurants
La Samanna
Love Heals Jewelry
Luxe
Lyn Evans
Malliouhana Hotel & Spa
McCabe Family
McCormick & Schmick’s Seafood Restaurant
Memorabilia Magic
Mia Hamm Foundation
Miami Dolphins
Mistral
Gretchen Monahan, owner Grettacole, G Spa,
Gretta Luxe and Grettastyle
Carla and Christine Pallotta of Nebo Restaurant
Neiman Marcus Copley Place
New York Football Giants
New York Jets
NFL Management Council, Mary-Ann Fleming
and Dennis Curran
Jack Nicklaus
Brian O’Donnell
Percy’s TV & Appliances
Reebok
Reed & Barton
RML Enterprises
Ruby Wines, Inc.
Artist Gordon Russell, Ponte Vedra Beach, FL
S.A. Chrobak, LTD. Photographic Artists
Sheraton Boston Hotel
South Seas Island Resort
Steiner Sports Memorabilia
Matt Stover
Studio Eleven
Suffolk Downs
The Boston Celtics Shamrock Foundation
The Capital Grille
The Fireplace
The Joshua Frase Foundation
The Kuse Family
The Liberty Hotel
The Mountain Top Inn & Resort
The Red Lion Inn
The United States Tennis Association (USTA)
The Westin Copley Place
Derrick Thomas
Tory Burch
Osi Umenyiora
Union Bar & Grille
Vinalia
Wachusett Mountain
Walt Disney World Co.
Sports Illustrated
Studio Eleven
The Capital Grille
The Charles Hotel
The Fairmont Copley Plaza
The Fireplace
The Huntington Theatre Company
The Joshua Frase Foundation
The Liberty Hotel Boston
The Millennium Bostonian Hotel
The Mountain Top Inn & Resort
The Museum of Modern Art
The Red Lion Inn
The Ritz-Carlton, Amelia Island
The United States Tennis Association (USTA)
Top of the Hub
Union Bar & Grille
Vinalia Restaurant, Lounge & Wine Bar
Wachusett Mountain
Walt Disney World Co.
Special Acknowledgement to
Boston Common Magazine
O’Neill and Associates
Scene Magazine
Event Management by
KMC Productions, Inc.
Kathy Cronin, Kim Wheeler, Erika Brunetti
Our Policy on Donor Names
It is important that our donors and friends know
that JFF never sells or shares our donor names and
addresses with any other organization. This policy
reflects our commitment as a charity to maintain
the highest integrity in order to protect and ensure
privacy while building a personal relationship with
each donor.
5

Gretchen Monahan Paul and Alison Frase and Don McPherson DJ Sky Nellor
Kenny Smith, Brandon Merriweather and Jerod Mayo Ted Johnson and Joe Andruzzi Bobby DiMarzo, Lauren Bayliss and Peter Wolf
Alison Frase and Ed Costa Bobby DiMarzo and Herb Chambers Aurora Ransbottom, Linda Pizzuti Henry, Ashley Renzi
and Laura Zecca
Rob Valentino, Shalrie Joseph and Taylor Twellman Greg Hill Harold Nash, Mark LeVoir and Ben Watson
6 www.joshuafrase.org

The Miracle of Nibs
The following is an account from Alison Frase, Co-Founder of the Joshua Frase Foundation.
The Joshua Frase Foundation (JFF) raises funds for medical research for
the treatment of and/or cure for neuromuscular disorders, to increase
awareness of the disease and to build a network of support for families
affected by these devastating disorders. Great strides are being made
towards finding therapies to treat and eventually cure neuromuscular
disorders. When success is proven, thousands of sick children will
be able to receive these treatments, which could extend and improve
the quality of their lives. This may be the last chance to save my son
Joshua. His health has declined dramatically and time is running out.
It is a miracle that he is now 14, but it has been a tough year.
The Federal Drug Administration (FDA) requires that doctors show
success in clinical trials from a large experimental model. Testing on
this type of model for MTM provides a critical opportunity to develop
and test treatments for safety and efficacy before running human trials
on children like Josh. And so our search began……
In the Fall of 2008, a female Labrador Retriever was discovered that
carries the same gene as I do for my son’s muscle disorder (MTM).
To date, this was the first MTM large animal ever discovered by
researchers anywhere in the world. This dog, Trixie, was found by a
veterinarian in Canada, Dr. Elizabeth Snead. Trixie did not show any
signs or symptoms of the disorder. The confirmation came when Trixie
gave birth to a litter of puppies and two out of ten showed symptoms
of MTM. The muscle tissue from the pups was sent to the University
of California, San Diego, to Dr. Diane Shelton, who confirmed they
were born with a muscle disorder.
Before we could speak to Trixie’s owner, she was spayed and our
promise for research with a large animal model came to a screeching
halt! I shared with Dr. Snead where we were with research and
how we desperately needed a large animal model for clinical trials.
Determined, Dr. Snead spent weeks trying to locate a female sibling of
Trixie. She finally found her and her name is Nibs. Dr. Snead learned
that Nibs also gave birth in August and two out of her ten pups were
affected, which confirmed that Nibs was a carrier of the same gene.
Dr. Snead provided me with the number of Nibs’ owners, Vic and
Karen, who also live in Canada. I called Vic, not knowing to what
extent, if any, he would consider getting involved. I explained where
we were with research and what we needed to do to get to clinical
trials. I told him that time might be running out for Joshua. I told him
about the nine children who had died this year due to this neuromuscular
disease. Before I could finish, Vic said, “I want to give you this
dog, I want to help your son.” I was overwhelmed with great joy. His
kindness was beyond words. My husband, Paul, and I agreed that I
needed to get on a plane immediately. We felt the urgency to get the
dog as quickly as possible. Vic and Karen adjusted their schedules and
drove six hours round-trip to meet me at the airport in Saskatoon,
Canada with Nibs. It was an emotional meeting and a very touching
goodbye. Nibs and I bonded quickly and by morning, I felt she trusted me.
The trip was a nightmare. The airlines lost my luggage along with the
dog carrier. My guard was constantly up; looking out for Nibs’ safety
and care. We stopped in Minnesota to break up the trip. The following
day, Nibs and I went standby on the second flight out. Upon arrival
at our destination, I handed Nibs off to a caring team of doctors and
their staff. I was emotional. I was also torn between knowing what
www.joshuafrase.org
Nibs needed to do for our son,
but I also knew that she belonged
with me. On my way back to my
own home, I called one of the
researchers and told him that
after Nibs gave them one to
two litters, I would like for her
to come live with our family.
The doctor agreed and assured
me of Nibs’ safety and comfort
throughout this process and that
the highest ethical and moral
standards are always upheld
when it comes to the care of their
animals. He spoke eagerly of the
progress he believes we can make
with Nibs’ help.
I sensed a new chapter in our
journey, another step towards
finding a cure for Joshua and
many other children like him.
We’ve entered another stage.
We’ve crossed another barrier
towards FDA approval. Hope is
finally in sight.
Shortly after Nibs’ arrival she
became pregnant and delivered
12 puppies. Six of the puppies
carry the gene for myotubular
myopathy. All are doing extremely
well, are happy, eating up a storm
and getting really big. The researchers and their staff are absolutely
amazing, giving the pups extra care and attention seven days a week.
Once Nibs’ duties as a mother were fulfilled, and after thoughtful
consideration, Paul and I decided it would be best for Nibs to return
home to her family. In Canada, she can resume her life on the farm
where she can run with the horses and hunt wild rabbits daily. Her
joyful reaction when she saw her owners, Vic and Karen, confirmed
that we had made the right decision.
As I write this, I am on my way home from returning Nibs to her
family, confident that we are one step closer to finding a cure for
neuromuscular disorders.
The past several months have been surreal – for the first time ever
a treatment for myotubular myopathy may be within reach. I am so
grateful to Nibs for the 12 gifts she has given us. The researchers are
learning more about neuromuscular diseases from dogs that carry
the gene than they ever have before. Knowledge gained from these
animals may one day lead to treatments not only for MTM, but other
neuromuscular diseases. It will be a miracle for our son Josh and
thousands of children like him if our goals are achieved.
Thank you for your interest, your hope and your willingness to
participate in finding and funding this miracle.
7

4th Annual Joshua Frase Foundation Golf Tournament
Thursday, July 16, 2009
DERRY, NH -- For the fourth year in a row, Ferdinando
Insurance worked hard to raise money for the Joshua
Frase Foundation by organizing a golf tournament.
Having been involved from the inception of JFF and
its annual gala, Keith Ferdinando decided to start a
golf tournament with friends and clients to support the
cause on the links. The first two years, the tournament
was held at Sky Meadow Golf course, and last year at
Andover Country Club - both prestigious 18-hole golf
courses. During this time, the golf tournament raised
over $65,000.
This year, the event was moved to Brookstone Park in
Derry, NH. Brookstone Park has a topnotch 9-hole
golf course with an equally impressive function facility.
On Thursday, July 16, 2009, 12 threesomes teed off
on nine Par 3 holes in support of finding a cure for
neuromuscular disorders. The person closest to the pin
Joshua Frase Foundation
c/o KMC Productions
222 Forbes Road, Suite 207
Braintree, MA 02184
on each of the nine holes competed in a playoff.
The playoff champion received the 50/50 winnings,
totaling $800.
With support from over 25 businesses and 40 individuals,
more than $37,000 was raised for JFF. We look forward
to welcoming more players at next year’s golf
tournament, to be held again at Brookstone Park.
JFF is Going Green!
Please update your e-mail
address by sending it to
info@joshuafrase.org.
Include “Updated E-Mail
Address” in the subject line.