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Board of
Directors
Rhonda McKeever,
Chairman
Denise Doria,
CFO
Patti Lawler,
Secretary
Ragan Cantrelle, Family
Outreach
Mitali & Rishi Dave,
Strategic Planning
Jacque DenUyl, Young
Adults / Networking
Shari & Tom Hume,
Fundraising / PR /
Communications
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Advisory
Council
Family
Outreach
Kalee
Carpenter
Casey
Dean
Suzanne
Edison
Jill
Szysko
Young Adult
Outreach
Myah
Stuemke
Amy
Maier
Medical
Collaboration
Julie
Wohrley
Social
Media
Annie
Mitchell
Fundraising
Lisa
Forgas
Robert
Slater
Damon
Smedley
Grant
Writing
Kelly
Gaither
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FEATURED
STORY
Introducting
Cure JM's FSN Regional
Reps
Cure
JM is delighted to announce our Family Support
Network (FSN) has expanded to include Regional
Support Representatives. The regional reps
will reach out to new families who register with
Cure JM by providing emotional support,
information and resources. Regional reps
will send a Cure JM Welcome Package to each new
JM family, which includes our new
12-page-booklet full of tips from JM parents and
patients, as well as charts and checklists to
help navigate their journey with JM. Click
here to view the on-line version of the Welcome
Kit.
Suzanne
Edison, FSN Director and Advisory Council
member, has been single-handedly managing all
new patient families for the past two years, and
is elated to have seven new regional reps to
help support Cure JM families. Suzanne
said the new reps have already embraced their
positions and are providing the one-on-one
support that is so important, especially for the
families who come to us right after
diagnosis. Suzanne added that these
outstanding reps have a passion and desire to
give back to the JM community that helped their
own families when their child was
diagnosed.
Suzanne
Edison and daughter Flora
Cure
JM co-founder, Shari Hume, said this is an
incredible group of moms willing to give of
their time and talents to help JM
families. Some are JM veterans who have
walked this path and have a wealth of experience
and knowledge to share with the newly diagnosed
families, as well as the families who have been
dealing with this disease much longer.
Some of the reps are newer to JM, but they have
learned the ropes quickly, and have become solid
advocates for Cure JM and their children.
I am so grateful to have them all on our FSN
team!
Meet
our New FSN Regional
Representatives
Michelle
Shewbridge is one of our new FSN reps,
and she lives in Aberdeen, Maryland with her
husband and two daughters. Her youngest
daughter, Rachel (now 10), was diagnosed in 2004
at age 4. Michelle said what I remember
most after Rachels diagnosis is being extremely
scared and not having the resources to gather
information and find support. I had so many
questions and no answers. Finding Cure JM was a
lifesaver! The information and support Ive
received is immeasurable, not to mention the
friends Ive made and families Ive met. I hope
to help other families by sharing my experience
and providing support to help them on this
journey. Were all in this together!
Jill
Szyszko is another new FSN rep and
Advisory Council member, and she lives with her
husband and three children in Coopersville,
Michigan. Jill is a photojournalist whose
daughter Olivia (now 7) was diagnosed in
2009. Jill has found that making
connections with people who understand JM has
been a key in helping her family cope with the
disease and access the support they need.
Jill is looking forward to providing similar
support to Cure JM families.
Jill
Szyszko and family
Ragan
Cantrelle is one of our board members,
who will be doubling as a FSN representative for
several Southeastern states. Ragan lives
in Mandeville, Louisiana with her husband, Cord,
and two sons. Ragans son, Cooper (now 8),
was diagnosed in 2008; and she and her husband,
Cord, are currently working hard on a golf
tournament to benefit Cure JM. Ragan is
happy to take on an additional role with Cure
JM, as she realizes how crucial it is to provide
the much-needed support to other JM
families. Ragan also works part-time as a
preschool teacher and is an active volunteer for
several additional organizations.
Ragan
Cantrelle and family
Anke
Smith is from Germany, and now lives in
Lake George, Colorado with her husband and
adopted identical twin sons from Khabarovsk,
Russia. Her son, Connor, now 6, was
diagnosed in January of 2010 with severe
JM. Connor is improving, and Anke feels
blessed to have found amazing doctors to treat
Connor. She is also grateful for the tremendous
support provided by Cure JM in their journey,
and is looking forward to helping others in the
same way.
Anke
Smith and family
Jill
Mickelson is a former board member of
Cure JM and lives with her husband and three
children in Tomahawk, Wisconsin. Jills
daughter, Gracie, was diagnosed at the age of 5;
and is now 15 years old. Jill has been
involved with Cure JM since it was initially
founded, and has led several successful
fundraisers. Jills experience will be a
great asset to our FSN team.
Jill
Mickelson (front row, 2nd from right) and
family
Shari
Shobe lives with her family in
Douglasville, Georgia, where she works full-time
for First Data Corp. Shari and her husband have
three children, including Kelsi (now 16), who
was diagnosed with JM in 1997. Shari is
looking forward to being the Southeast
representative for Cure JM, and said the day I
found the Cure JM website was one of the best
days of my life. Im very happy to be part
of the team!
Kalee
Carpenter lives with her husband and
two daughters in Leedey, Oklahoma. Kya was
diagnosed with JM in 2009 at the age of
two. Kalee immediately took action and
attended the Cure JM conference several weeks
after Kya's diagnosis. Since then, the
Carpenter family has been very active in
fundraising for Cure JM, and Kalee is an
Advisory Council member. Kalee has a
special interest in providing support to other
JM families, and she will be an incredible
resource for other JM families.
All
of the regional representatives pictures, bios,
and contact information is posted on our website
in the Family Support Network section at http://www.curejm.org/organization/fsn_reps.php.
Please feel free to connect with your regional
rep and also spend some time reviewing the new
information posted in this section, which
includes a helpful section of health insurance
tips and links. Also, contact us at
info@curejm.com if you would like to get more
involved in the Cure JM Family Support
Network. We currently have an open
position for an FSN regional rep for the region
covering Texas, Oklahoma, New Mexico, and
Arizona. |
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WHAT'S
NEW
Register for National
Conference & Fundraiser: June 23rd-25th in
Seattle, Washington
Our
next National Conference and Fundraiser will be
in Seattle in conjunction with Seattles Rock
& Roll Half Marathon and Marathon. The event
will kick-off on Thursday, June 23rd with an
informal welcome dinner. Friday, June 24th will
consist of a variety of breakout sessions and
research updates for JM families, as well as a
recognition dinner. The conference culminates on
the morning of Saturday, June 24th with
Seattles Rock & Roll Half Marathon and
Marathon, where Cure JM supporters will run/walk
or volunteer along the race route to raise money
to continue JM research.
To
participate, please set-up your personal Cure JM
fundraising page at: www.firstgiving.com/curejm.
If
you are planning on running in either race, you
will also need to complete your race
registration at: http://seattle.competitor.com/.
All runners should complete their race
registration ASAP, as we have been advised that
the race usually sells out.
Click
here for flyers, travel details and more
information.
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Secrets to Fundraising
Revealed
For
those of you running or serving as a virtual
fundraiser for Seattles Rock'N'Roll Marathon
& 1/2 Marathon, here are some
fundraising tips from a family who raised over
$50,000!
- Set a
ridiculous target. Setting
a giant goal for yourself gets you motivated
early, and as past experience shows, generally
leads to overshooting your target.
Estimate the number of people in your personal,
professional, and extended networks. Make
some assumptions of participation rate and
average donation. Do the math.
For
example:
500 friends * 20% participation *
$100 average donation = $10,000 realistic
target.
If raising $10,000 seems realistic,
multiple by 5, and set your ridiculous target at
$50,000.
- Setup
your fundraising website on
firstgiving.com/curejm
including a photo, so the people you hardly know
might recognize you when they go to the
link! On the right side of
firstgiving.com/curejm, you can browse other
familys Cure JM fundraising websites to get
ideas.
- Put
together a list of EVERYONE you
know family, friends, current
colleagues, past colleagues, neighbors, church,
school, doctors, therapists, coaches, music
instructors, hair dresser, drycleaner, coffee
shop, etc. etc..Do not edit your list but let
people edit themselves, with the theory that you
never know who might connect with the cause and
want to make a donation. Often it is the people
who you barely know, who make the largest
contribution.
- Send
FOUR short emails to ask for
donations initial request,
midpoint training update, final request for
donations before the marathon, and one more
final update after the marathon. Keep the emails
short so that people dont see your name in
their inbox and think OH NO!
- In each email, include why you
are running, how your training is going, and how
Cure JM depends on personal
donations to find a cure given
the lack of pharmaceutical and government
funding for rare diseases. Make sure to
include the link to your firstgiving
website. Also try to make the emails
somewhat amusing.
- Tailor
the emails to people who have already given, and
people who havent donated
(yet!). Some friends may donate
a few times because they want to help you hit
your target! In your final update to
non-donors after the marathon, start with its
not too late to donate and fight JM, and heres
why: etc. with a link to your firstgiving
website in the first line. The final
post-marathon email alone can raise thousands of
dollars. Do not give up if youve asked a few
times and someone didnt respond theyre
probably just busy, not ignoring you. How
many times do you yourself intend to donate to
someones cause, and then just simply forget to
follow through?
- Don't
forget social media. Post
your training efforts with links to your
firstgiving website on Twitter, LinkedIn, and
Facebook. You may also want to post a link
to the Cure JM fundraising video at http://www.youtube.com/watch?v=QiWX0qz4C-g
or create your own fundraising video using
Animoto like this one created by the Hume
family: http://www.youtube.com/watch?v=fAAdqkpoojE.
- Mail a
letter with a fundraising form to all those you
dont have an email address for
(e.g. all the neighbors). Include a handwritten
card and return envelope. Pick fun bright colors
for this so that it stands out in their mail and
to make it fun for yourself when you check the
mail everyday for your return envelopes!
- If you have raised money in the past, also
mail
handwritten requests (letter & fundraising
form) to past top donors.
- Email
thank you notes as immediately as
possible. If possible, handwrite
thank you notes to everyone or at least, ask
for an address if you dont have one. For
all donations over $1,000, send a personal gift
that you know the donor would appreciate like
chocolates/champagne/red wine/steak. The thank
you notes are very important. The next
time you fundraise, people will remember your
thank you note, and be much more receptive to
donating again.
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JM Family Raises $4000+
Selling Whoopie Pies
Special
thanks to Jen Weers for writing this
story
It
is amazing what a little sugar can do.
Especially when that sugar is wrapped in
pumpkin, red velvet, and chocolate whoopie pies.
For the Seibel family of Pennsylvania, the sugar
in these delectable treats represents the hope
for a cure.
The
Seibels daughter, Avalon, was diagnosed with
juvenile dermatomyositis in September of 2009,
when she was five-years-old. Avalon had leg pain
that progressively worsened. The first doctor
Avalon saw was unable to determine a reason for
her pain. Like many families, their journey to a
diagnosis and recovery has been a struggle.
The
Seibels want to do their part to spare other
children of the heartbreak that journey can
deliver. For this family rooted in food services
(Jon is a manager of a restaurant/bakery, Katie
works at a family restaurant), there was a
logical link. Over 1,400 whoopie pies in three
different flavors were lovingly made by the
bakery staff at Hershey Farm Restaurant in
Strasburg, PA.
On
a beautiful August day in front of The Pancake
Farm, a restaurant in Ephrata, the family set up
a stand to sell the treats. Katie said We
had fun hanging out with our family and sharing
information on JDM with lots of people.
The
family raised over $4,000 for Cure JM selling
the pumpkin, red velvet, and chocolate whoopie
pies.
Avalon
is now being weaned off of medicine and her lab
results have been reassuring. The Seibels are
thankful for her progress.
This
will be an annual event and we look forward to
helping raise awareness and funds to help find a
cure, Katie
said. |
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Vote for Cure JM
Advocate Savannah
We
all know the voting power of our Cure JM
families in winning the Pepsi Refresh contest,
and most recently, the Cartwheels for a Cause
contest. Now its time to use that voting
power to help Savannah Outen win the J-14.com
Female Singer Rising Stars Award!
Savannah is a young musician who has been a huge
advocate of Cure JM. She has played at
both Cure JM Hillsboro Oregon benefit concerts
which have raised nearly $100,000 for Cure
JM. Savannah has also taken the time to
visit several JM children at the Portland
Children's hospital. Her voice and her
music are breathtaking. Lets show our
support for Savannah, who is a star in so many
ways.
It
only takes THREE clicks to vote.
Click
on this link: http://polls.j-14.com/polls/266686
Click
on Savannah Outen (6th from the top).
Click
on VOTE.
You can vote once
from each computer and smart
phone.
To
hear Savannahs music, click here: www.youtube.com/user/Savannah7448 |
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