Cure JM Foundation Newsletter

 

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 Rachel’s 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 I’ve received is immeasurable, not to mention the friends I’ve made and families I’ve met. I hope to help other families by sharing my experience and providing support to help them on this journey. We’re 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.  Ragan’s 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.  Jill’s 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.  Jill’s 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.  I’m 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.org 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.

 

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 Seattle’s 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 Seattle’s 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.

 

 

 

Secrets to Fundraising Revealed

 

For those of you running or serving as a virtual fundraiser for Seattle’s Rock'N'Roll Marathon & 1/2 Marathon, here are some fundraising tips from a family who raised over $50,000! 

 

1. 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. 
2. 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 family’s Cure JM fundraising websites to get ideas.
3. 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.
4. 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 don’t see your name in their inbox and think “OH NO”! 
5. 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.
6. Tailor the emails to people who have already given, and people who haven’t 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 “it’s not too late to donate and fight JM, and here’s 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 you’ve asked a few times and someone didn’t respond – they’re probably just busy, not ignoring you.  How many times do you yourself intend to donate to someone’s cause, and then just simply forget to follow through?
7. 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://youtu.be/7l4R2ADkfuw or create your own fundraising video using Animoto like this one created by the Hume family: http://www.youtube.com/watch?v=fAAdqkpoojE.
8. Mail a letter with a fundraising form to all those you don’t 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!
9. If you have raised money in the past, also mail handwritten requests (letter & fundraising form) to past top donors.
10. 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 don’t 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.

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 Seibel’s 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.

 

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 it’s 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.  Let’s 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 Savannah’s music, click here:  www.youtube.com/user/Savannah7448