Circle of Life
Making a Difference in the Lives of Young People
Table of Contents
Onward, Upward and Westward 1-2
Collaboration and Sustainability 3/5
Summer 2011
Onward, Upward and Westward:
Catching Up with Darius Weems
Fearlessness breeds progress, and no one knows this better than twenty-one-year-old
Darius Weems. He battles Duchenne muscular dystrophy (DMD) with humor, passion,
4-5
and inspired rap lyrics. In 2005, with eleven of his closest friends in tow, he undertook
“the roll of his life”—a 7,000-plus mile roundtrip adventure from his hometown of
A Promise Kept
6-7
Athens, GA, to Los Angeles.
Other Matt’s Promise
His initial mission had three major goals—to increase awareness of DMD; to
Happenings6
highlight areas for improvement and advancements in accessibility throughout
America; and to travel westward to California to appear on MTV’s Pimp My Ride. The
New FDA Report
8
trip was filmed because Darius and his crew knew that it was imperative to document
the journey.
Randy Reiff, President
The MTV appearance would have accomplished the first two objectives, as Pimp
Jennifer Rothberg, Vice President
My Ride had tens of millions of viewers at the time of Darius’ trip. It also would have
Diane Laylin MacDonald, Executive Director
upgraded his wheelchair to truly unique status: he envisioned spinning wheels,
Mary Hirsch, Newsletter Editor
subwoofers, and a sidecar for his friends to join him wherever he went.
Joceyln Cohen, Contributing Writer
Rachel Iseman, Contributing Writer
It was not to be. The timing wasn’t right.
However, when Darius returned home to Athens, a local shop customized his
Matt’s Promise is dedicated to making
wheelchair for him. The additions included, among other things, speakers and wild
Together We’re Making
A Difference
a difference in the lives of young people
affected by terminal illnesses. Our
commitment, through select funding of
treatment, research, education and
support programs, is to advance the
fight against these diseases and to
assure the most comprehensive,
innovative & compassionate care.
Matt’s Promise
171 Clermont Ave, 6Q
Brooklyn, NY 11205
(646) 546-0644
[email protected]
www.MattsPromise.org
Many thanks to Jocelyn Cohen
and Rachel Iseman for volunteering
their time to provide content
for this newsletter.
Continued on p.2
Onward, Upward and Westward: Catching Up with Darius Weems
Continued from p. 1
spinners on his wheels. He loved the
improvements to his chair, though he
“used to get in trouble at high school
for blasting the music as [he] cruised
the halls.” Though a new chair
serves his everyday needs, he still
takes his pimped out wheels for a spin
on weekends.
Darius Goes West was released
in 2007 and it gains more momentum
with each passing year. Darius
followed the lead of his beloved older
brother, Mario, who lost his fight with
DMD at age nineteen. Darius won’t
“just sit in one mode and live.” He
makes moves. After graduating from
high school in 2008, he and his crew
took another cross-country trip. The
nature of Darius’ travels underscores
the importance of interconnectedness.
The bonds that he shared with each
friend on both trips were forged
with immeasurable trust, and every
member of the crew was essential.
Darius recounts that on the second
trip, they went “north, south, east
and west, visiting middle schools
and high schools and doing Q&A
[sessions] at hundreds of screenings that our supporters hosted.”
The impact of the second trip
was monumental – it sparked the
beginning of DGW’s Know About It
program, which “offers a free DVD
to educators, along with lesson
plans in all subjects that go with
the film,” Darius explains. He now
has over 15,000 student fans with
a greater understanding of DMD,
and many of them organize and
participate in fundraising efforts
to advance the cause. Darius
now virtually interacts in real-time
dialogues with students via Skype,
enabling him to speak with kids across
the country while remaining in his
hometown.
Darius’ tireless push for awareness
earned him an award from Do
Something in 2009. Do Something
encourages young people to pursue
causes with fervor, and Darius is a
shining example. While he was in
New York to accept the award, Darius
learned that MTV would air DGW on
both MTV2 and mtvU.
Timing was everything—DGW
aired on September 27, 2009, which
was Darius’ twentieth birthday. Above
and beyond that, MTV donated
$10,000 to Charley’s Fund in Darius’
honor. Fittingly, they also apologized
on-air to Darius and Logan, the
director and editor of DGW, and one
of Darius’ closest friends. “It felt like a
huge victory,” Darius recalls. “For four
years, we would do Q&A [sessions]
with audiences, and our fans would
always say how upset they were with
MTV for turning us away. I think it took
a lot of guts for them to apologize on
CNN in an interview with Logan and
me. We got a ton of great feedback
from MTV viewers [once DGW aired].”
Darius currently travels to
Baltimore every three months
to participate in a clinical trial at
Johns Hopkins, which focuses on
older boys who have DMD-related
cardiac issues. He continues his
outreach work, constantly heightening
awareness of DMD nationwide. In
his quest, he hears from multiple fans
daily, and finds it “so gratifying that
our movie still has that effect, and that
makes me proud.”
To learn more about Darius and DGW,
check out www.dariusgoeswest.org.
Reported by Jocelyn Cohen
Darius with friend, Logan, the director/editor of Darius Goes West
Collaboration and Sustainability
I am thrilled to introduce our supporters to Diane Laylin MacDonald, Matt’s Promise new Executive Director. Diane is a highly
motivated, creative and versatile leader with over 25 years’ experience in the event and hospitality industry, and nearly a
dozen years working with non-profits developing long-range strategic plans, events, budget development, donor cultivation
and stewardship, as well as enhancing communications and marketing. Diane comes to us having spent the last six years
working in international development with organizations including Action Against Hunger, Chefs for Humanity and All for Africa.
Her passions include children’s health and nutrition and working to reduce poverty through social entrepreneurship and microfinancing initiatives. Over the last six months, Diane has already had a profound impact within Matt’s Promise. Please join me
in welcoming Diane into the circle of Matt’s Promise family and friends!
Randy Reiff, President
A Conversation with Diane L. MacDonald
Q: What led you to work with Matt’s
Promise?
Diane: I am thrilled to be a part of an
organization with such a personally
driven mission, and with a focus on a
childhood illness that, in the past, has
been very much under the radar. I
look forward to utilizing my skills and
expertise to assist in delivering our
mission to a broader audience.
Q: What has impressed you most
about the organization?
Diane: Matt’s Promise Board, the
Advisory Board, the founders and
the directors of Charley’s Fund (one
of our cornerstone projects) are
committed with a passion and a drive
not often found and I am honored to
be able to support their efforts.
Q: What is the most important
message you want to convey to
people about Matt’s Promise?
Diane: Matt’s Promise’s current
core project is working to find a
treatment or a cure for Duchenne
muscular dystrophy and we are truly
on a race against the clock. While
we are funding the most current and
promising scientists, researchers
and pilot studies, it still feels like we
are not able to do enough in the time
that remains for boys and young men
like Charley Seckler and Darius. The
average life expectancy for a child with
DMD is late teens to mid 20’s. When
one considers this diagnosis, there is
clearly a call to work with urgency to
find a treatment.
Q: What would you like to accomplish
in the next several years with Matt’s
Promise?
Diane: My immediate goal is to
increase our presence and our
fundraising efforts by reaching
a broader constituency, creating
additional events and re-designing
our website to be a more informative
resource. I would additionally
like to extend our volunteer pool.
Volunteers are a valuable resource
for this organization – we had over 40
volunteers that supported our event in
May and were key to our success. We
currently have several new volunteers
supporting our newsletter and we are
planning to start a blog with their help.
Q: What about right now? How can
people get involved?
Diane: There are several ways
individuals can get involved and support
Matt’s Promise. If someone is running
in a marathon or participating in a
triathlon or iron man competition, we
can set up a web page for them to raise
funds for Matt’s Promise as part of their
participation. We are also reaching out
to groups and individuals who would be
interested in hosting fundraising events to
introduce Matt’s Promise to their families,
friends and colleagues. A small dinner
party in someone’s home is an ideal way
to connect and tell our story.
Q: Can you speak about your emphasis
on collaboration and sustainability?
Continued on p. 5
Together We’re Making A Difference
Anyone who attended Matt’s
Promise 6th Annual Benefit Concert
heard Benjy Seckler speak about
the research we are currently
helping to support. If you heard
Benjy tell his story, it had to
touch your heart and all around
the room, eyes were glistening
and the emotion of the moment
was contagious. Benjy’s story
was poignant and heartbreaking.
Imagine sitting at the dinner
table and the people who make
you burst with pride and feel so
overwhelmingly joyful, surround you.
First, your oldest son recounts his
day playing one sport or another.
Then, your daughter shares her
day, full of activity and movement.
But your middle child, whose tender
heart and unmatched sense of
humor, looks you square in the eye
and says, “If I can’t do all that, why
bother living?” How can a father sit
there, with his cherished child, and
not feel the world crashing down
around him. And it is.
Each day, Charley experiences
Duchenne muscular dystrophy’s
effects. He can’t play and run and
keep up with his siblings as he has
in the past. For a child who simply
LOVES sports, this is devastating
and frustrating. And it isn’t getting
any easier.
That said, Matt’s Promise,
working in partnership with
Charley’s Fund, is pulling out all
of the stops. By working together,
we have the opportunity to do so
much more, reach further, and have
a bigger impact. Every donation,
every volunteer helps the cause and
provides hope.
A Letter from Benjy and Tracy Seckler, Founders of Charley’s Fund
Dear Matt’s Promise
supporters,
First, let us thank
everyone who joined
us at Matt’s Promise
6th Annual Benefit
Concert. It was a huge
success and advanced
our goal to fund more
participants in the trials
we are funding. It is the
support of friends like
you who are making
us hopeful for Charley
and every other boy
who is facing DMD and
its horrendous prognosis. It is difficult to
express how important
this is as I watch my ten-year-old
suffer and ask, “why me?” By putting
my energy into the work of helping
researchers find a cure, we can tell
Charley we are doing all we can and
there is hope. Thank you for the part
you have played in making this true.
The two pilot trials we are funding
are going very well and according to
plan. The first is the sildenafil trial
at Johns Hopkins/Kennedy Krieger
Institute. It has 12 patients enrolled
with several more slated to join
in the coming weeks. We cannot
reveal any information about how
the patients are doing until the trial
is complete. So far, all the patients
are tolerating the drug well. Darius
Weems from Darius Goes West is
in the trial and he swears he feels
better already! That surely could be
a placebo effect but it’s nice to know
that at the very least we are giving
him hope, which is making him feel
better. In the best-case scenario, his
heart actually is stronger! However
we won’t know until the data is gathered and reported.
The second trial is at Cincinnati
Children’s Hospital. It has 24 patients
enrolled with more lined up to begin
as well. Patients in that trial are also
tolerating the drug well. Increlex,
the drug we are testing, has the
potential to stabilize muscle strength
and function and also mitigate the
side effects of steroids, which is the
standard of care now. Steroids have
a host of serious side effects such as
excessive weight gain, loss of bone
density, and delayed puberty/stunted
growth. It’s the reason Charley (who
starts middle school in September)
is smaller than his sister, Maisy, who
just finished kindergarten. Here is an
Continued on next page
Collaboration and Sustainability
Continued from p. 5
I am passionate about the need for more collaboration in the non-profit sector and believe it is essential for long-term
sustainability. In 2007, I had the opportunity to travel to Nicaragua and experienced first hand how the organizations
delivering aid there were not working together, making their efforts less effective and less sustainable. Matt’s Promise is
an organization that is effectively applying a collaborative model to their work. Our partnership with Charley’s Fund and the
collaborative efforts of the scientists and researchers are essential to the discovery of a treatment or cure for DMD. I am
pleased to be working for an organization that reaches out in partnership to support like-minded organizations - we are all
working toward the same goal and together we have a greater chance of delivering a successful outcome.
Q: What achievement(s) are you most proud of thus far in your life?
Diane: I spent several years working one-on-one with autistic children and teaching occupational and physical therapists
how to integrate yoga into their practices. I created a practice, Sensory YogaPlay, which is used today by many teachers
and therapists. I am most proud of my teenage daughter, Jessica. I have been involved in not-for-profit work for many
years as a volunteer and in my career – so watching my daughter engage in service and volunteerism has been very
rewarding. Jessica spent a month in Sierra Leone last year volunteering for an organization that is building an eco-tourism
project. She was an intern at Keep A Child Alive, and has also volunteered this year as a team leader coaching teens.
Jessica loves helping out at special events and was a volunteer this past May at Matt’s Promise 6th Annual Benefit. She
looks forward to continuing to support the organization and our mission.
If you would like to contact Diane, please email her at [email protected].
A letter from Benjy and Tracy Seckler
continued from p. 4
email I received from a man whose son is in
the trial:
I’m the father of ----, who is 7. He’s the
light of our lives and the inspiration to many.
Yesterday he was chosen as the recipient
of the IGF-1 drug as being part of the study
in Cincinnati. We don’t know how it will work
out for Duchenne boys but we are honored
to be a part of the trial. I wanted to send
you a note of thanks for funding this trial.
It’s a blessing that you guys would fund this
effort and I hope it helps all our boys. We’ll
be diligent about following through with the
study and let’s hope and pray the results
show promise enough for the FDA. Thanks
again for funding this study!
Together we are making a real difference. Thank you for your generosity.
From our hearts to yours,
Tracy and Benjy Seckler
The Year of Doing Everything for the Seckler Family!
A Promise Kept: Reflections on the 6th Annual
Reflections by Jocelyn Cohen
Benjy Seckler provided a heart-wrenching update.
Caroline B. Budner was this year’s recipient of the
Matthew Wiederkehr Leadership Award presented
by Randy Reiff, Matt’s Promise President, and
Jennifer Wiederkehr Rothberg, the Vice President
of Matt’s Promise.
When John Mayer strummed the
opening chords of Stop This Train,
I felt my breath catch in my chest.
The song shuffles slowly like its title
subject, wending its way along a track.
It reflects on time’s constant forward
march, begging it to stop completely
or at least slow to a crawl. Though I’d
known the song for years, it resonated
with renewed significance on May
12, at Matt’s Promise Sixth Annual
Benefit.
By the time John began his set, I’d
learned so much about Matt’s Promise
and its fervent supporters. When I’d
arrived at Cipriani Wall Street with
my good friend, Rachel, earlier in
the evening, the positive energy was
palpable. There was a buzz and hum
throughout the room—it was easy to
tell that attendees and volunteers alike
were proud and moved to be there,
to attest to the strength of Matt’s
Promise, and to continue the grueling
fight against Duchenne muscular
dystrophy.
As a newcomer, I read Matt and
Charley’s stories intently, and I was
struck by the sense of urgency that
inextricably linked them together. I
This year’s
6th Annual
Benefit,
featuring
John Mayer,
drew nearly
1,000 guests
and was
a sold out
event!
knew beforehand that DMD was fatal,
and I knew that it affected a large
population, but until the Benefit, I
didn’t understand just how young the
boys were and just how many of them
were afflicted worldwide. My eyes
were opened not only to the sheer
magnitude of the disease, but also to
the impressive progress that’s been
made towards a cure.
I enjoyed the auction and was
intrigued by the diversity of the lots—
everything from a Super Bowl trip to
a Costa Rican vacation to a golden
retriever puppy—and amazed by the
generosity of everyone in the room.
Once John played his first song,
the crowd switched into full-fledged
concert mode and enjoyed wellknown hits including No Such Thing
and Daughters, along with a wistful
interpretation of Tom Petty and the
Heartbreakers’ Free Fallin’ and other
original tunes. Still, it was Stop This
Train that left an indelible mark—“I
can’t take the speed it’s moving
in/I know I can’t/but honestly, won’t
someone stop this train?” With the
work of Matt’s Promise, hopefully we
can bring it to a grinding halt.
Benefit Concert
SPIN to Benefit Matt’s Promise!
2011 Wrap-Up
• Nearly 1,000 people attended this
year’s event.
• The event grossed over $1.3
million and thanks to your
generous support we are helping
the 60,000 boys who suffer each
day with DMD.
• This year, we had four dynamic
co-chairs, an event committee
and a junior committee. We
would like to thank our co-chairs
Thomas Marano, Jeffrey Mayer,
Josh Weintraub, and Michael and
Elin Nierenberg whose support
and generosity were a driving
force behind this year’s success.
Our new junior committee brought
a great new energy to our event
and was chaired by Alex Fletcher.
• Our sponsor list this year included
many of our long-standing
and steadfast supporters who,
together with a tremendous
group of additions, comprised our
largest sponsorship group ever.
On the top of the list were our
underwriters, Joseph Tabak and
Steve Gordon. The event would
not have been a success without
you and all of our other sponsors!
• This year’s honoree was Caroline
Budner. Those who know Randy
Reiff, Matt’s Promise President,
also know that Caroline is an
integral part of the success and
growth of Matt’s Promise.
Tuesday, Sept. 20
7:15-9:00 p.m.
201 East 67th Street, 3rd Floor
Includes SPIN ride and reception to follow
Enjoy the Flywheel spin ride that delivers a high intensity cardio
workout while raising funds for Matt’s Promise.
Ride includes: water, towels, riding shoes,
changing facilities in a breathtaking studio
To join us for this fun and energizing evening, go to
www.MattsPromise.org or contact
Diane at 718.522.1639 and register today!
Run to Save a Life!
Are you running in the ING New York City Marathon 2011?
Do you know anyone else who is?
If you are already registered, you could help
Matt’s Promise raise funds that will allow us to do more!
To learn more about running on behalf of Matt’s Promise,
please contact Diane at 718.522.1639
or email her at [email protected].
(Only those already registered in the New York City Marathon qualify.)
171 Clermont Ave. Ste. 6Q, Brooklyn, NY 11205
What You Should Know About Sunscreen: New FDA Regulations & Tips for Selecting the Right Sunscreen
The world of sunscreen products is confusing
and overwhelming. Do you pick the waterproof
brand, spray on, 80 SPF, or avoid the sun
altogether? According to a recent article in The
New York Times, after 33 years of deliberation,
the Food and Drug Administration (FDA) is
taking a stance and putting a lid on many false
claims made by companies touting that their
product is waterproof, and they are enforcing
new rules that specify which products offer
the best protection from the sun’s dangerous
cancer-forming rays.
In the 1970s, getting as dark as possible
was a goal of many sun worshippers. Now we
know that sunscreens with an SPF of anything
less than 15 is considered to be a tanning
product, not sunscreen. When the public finally
understood how dangerous the sun could
be, speeding cancer along or damaging skin,
companies began producing products that
helped to filter both UVA and/or UVB rays.
Beginning as early as next year, according
to the FDA’s announcement, sunscreens will
need to protect against both damaging types
of rays to receive the desirable designation of
providing “broad spectrum” protection. UVB
rays cause burning while UVA rays cause
wrinkling, and both cause cancer.
Sunscreen manufacturers will also
have to change their labeling that their
product is falsely sweat and waterproof.
Depending on test results, each
manufacturer will have to print specifically
the number of minutes their product
remains effective. Only sunscreens with
an SPF above 15 will be allowed to claim
that they prevent sunburn, skin damage
or cancer. Any product that isn’t “broad
spectrum” or has an SPF of 2 to 14 must
include a warning that their product has
not been shown to help prevent skin
cancer or damage.
Another aspect in the confusing world
of sunscreens is SPFs. Federal regulators
said they had yet to decide whether to
end an SPF battle between manufacturers
of this $680 million industry that is
introducing sunscreens with SPF numbers
as high as 100 even though they offer no
more protection than those with an SPF of
50. In fact, dermatologists are concerned
that the lotions with a higher SPF expose
people to ingredients that may be less than
healthy. The SPF competition is a result of
an aging population and increased concerns
about skin cancer.
Also of concern to the FDA are sprayon sunscreens that have the potential of
being inhaled into the lungs, without any
back-up testing to determine the possible
consequences.
Tips for buying sunscreen:
• Select a sunscreen that says broad
spectrum on the bottle. These provide
protection against both UVA and UVB
rays.
• It should have an SPF of 15 or higher.
Remember that sunscreens with an
SPF of 45 or higher don’t allow you to
stay out longer. You still need to reapply
every two hours.Make sure the label says
that it contains sunscreen. Some lotions
and tanning oils don’t, so they’ll offer no
protection from the sun’s harmful rays.
• In the list of ingredients, it should include
one these: oxybenzone, sulisobenzone,
avobenzone (Parsol 1789), ecamsule,
titanium dioxide or zinc oxide.
www.fitsugar.com/Tips-Buying-Sunscreen-1579365