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Cure JM Foundation Newsletter

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March 2014

 
 

WHAT'S NEW

  • 2014 National Conference 
  • UPDATE!  Cure JM Funded Research
  • Aly's Big Sister Helps Her Fight JM
  • $10 Billion Left on Table
  • Cure JM Awarded Two Prestigious Distinctions
  • JM Dad Featured on Huffington Post
 

CURE JM RESEARCH CENTERS

  • Cure JM Program of Excellence in JM Research at Children's Hospital of Chicago Research Center
  • GWU Myositis Center
 

Cure JM's mission is to provide support for families coping with JM, raise awareness of JM, and fund research that will ultimately lead to a cure.

www.curejm.org

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Match Your Donation

Some companies have a March deadline to match 2013 donations, so submit your match request now

Find out if your employer matches charitable giving or reimburses charity for volunteer service, click here

Three Ways to Join Cure JM

1.  Patients & Parents.  Join the Family Support Network and receive a Cure JM Welcome Kit.  Click here.

2.  Grandparents.   Join the Grandparent Support Network.  Created by Grandparents, for Grandparents.  Click here.

3.  Friends, family, anyone!  Join Team JM and join the fight against Juvenile Myositis.  Click here. 

Upcoming Events 

Hershey Park Event 

Sunday, April 13

Hershey, PA

Eric Dittleman Show 

Thursday, May 8

Upton, MA

Cure for Chase 5k Run/Walk

Sunday, May 25

Georgetown, TX

Texas Family Event

Saturday, July 19

Martindale, TX

​Cowboy Brad Concert

Saturday, July 26

Estes Park, CO

Click to RSVP and view all upcoming events

Who's Who at Cure JM

Board of Directors

Advisory Council

Family Support Network

Grandparent Network

Team JM Fundraising Coaches

Staff

WAYS TO GIVE

Become a Sustaining Supporter - Sign up to give automatically each month so you don't even have to think about it!

Donate Stock now!  Learn more at www.curejm.org/future

Remember Cure JM in your will - Join our Legacy Club

 

 Fundraising Tip

Simple - Easy - Effective

Create a fundraising page for any occasion!

Friends and families are raising money in honor of birthdays, weddings, holidays and more!

Click here to create your own page today or email info@curejm.org to get started

Participate in a JM Research Study

Researchers are recruiting volunteers for a wide-variety of JM research studies.   


Click here to learn more, get involved and help find a cure.

 

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Cure JM's 2014 National Conference in San Jose,CA October 3rd-5th

You're invited!!  This October, come together with the Cure JM community at the 8th annual Cure JM National Educational Conference & Fundraising Event.  

This year's conference will be in San Jose, CA October 3rd -5th.  Highlights include a welcome reception, intimate breakout sessions about coping with real life issues facing JM families, an educational forum with top JM experts, a recognition dinner and the San Jose Rock 'n' Roll Half Marathon and 5 mile run.  

Bring the whole family!  This year's conference features breakout sessions especially for dads, grandparents, young adults, teens/tweens, children and JM caregivers.  

Save the date!  October 3rd -5th

More details coming soon.  Contact info@curejm.org with any questions.


 

Cure JM Funded Research

Since 2003, through mostly grassroots fundraising efforts, Cure JM has raised over eight million dollars for Juvenile Myositis research.  

“Cure JM support of this research would not have been possible without the involvement of the Cure JM community,” says Patti Lawler, Cure JM Vice President of Research.  “We are excited about what has already been learned and optimistic about new developments on the horizon.”  

https://staticapp.icpsc.com/icp/loadimage.php/mogile/735220/f4aab9122ff9d8cdbc45bd4f1813d09e/image/jpegNow for the first time, Cure JM's website features an explanation of some of this research in layman's terms, including:

  • A study indicating that the loss of nailfold capillaries is directly associated with the inability to absorb prednisone given by mouth, compared with giving prednisone by vein, providing the reason for high dose IV steroid therapy that has proven to be so useful  in treating children with JDM, that is now in use nationally.  
  • An effort to work with myositis doctors from the U.S. and Europe to examine a large number of different genes by a method called genome-wide association (GWAS).  The overall goal of this project is to identify new genetic risk factors for juvenile and adult dermatomyositis and genetic risk factors for certain disease complications.  
  • A project aimed to assess environmental factors in relationship to increased disease activity (flare) in juvenile and adult dermatomyositis and polymyositis.
  • And much, much more.

Click here to read more about Cure JM funded research.  


I Will Help My Little Sister Beat Juvenile Myositis

by Julia Wilson, age 14

Julia Wilson never imagined that she would have a little sister facing a rare and life-threatening disease.  But Julia is the oldest sister to Aly who was diagnosed with Juvenile Dermatomyositis when she was three years old.  

https://staticapp.icpsc.com/icp/loadimage.php/mogile/735220/e4072a51ea4527e32a69dc02c8f962be/image/jpegIn the two years since her diagnosis, Aly has suffered through a painful and demanding JM treatment regimen.   Aly has endured over 700 doses of daily oral steroids, over 100 chemotherapy injections and dozens of all-day plasma and steroid infusions.  Aly has had dozens of hospital trips and regularly sees several specialists including rheumatologists, pulmonologists and more.  This is nothing that a five year old should deal with, but through it all, Aly remains optimistic.

With the support of her family -- especially her two big sisters, Samantha and Julia -- Aly knows she can overcome anything.  Last week, Aly took her last dose of oral steroids and she will start kindergarten in the fall.  Aly's JM battle isn't over, but together their family knows they can overcome whatever ups and downs this disease throws at them.

Below, Julia tells her story and what it means to her to be a Cure JM Super Sibling:

Hi.  My name is Julia and I am fourteen years old.  I am writing to tell you about being a Cure JM Super Sibling.  

My youngest sister Aly was diagnosed with Juvenile Dermatomyositis when she was three years old.  When she got sick, I knew I would do anything at all to help her.  Helping my sister means so much to me.  

When we went to the Cure JM National Conference in Chicago this past summer we met families from all over the country. It makes it easier to deal with the things we have to go through as siblings, parents and patients because you get to meet people going through the exact same things as you are.  We get to be connected in positive ways from a not-so positive situation because of Cure JM.

With all that she goes through it is a good feeling to know that something as simple as having a fundraiser at my middle school could have an impact not only on my sister's life but other children's as well.

Cure JM has become a common name not only in our household but now also in  my middle school.  To me, Cure JM means connecting lives.  Because of Cure JM we have met many new families and had many experiences we would not have been able to do otherwise.

I wish that my sister and my family never had to go through this, but I am glad that we can be there to help her.  And I am glad that my sister can see me helping her and she knows that we love her.


$10 Billion Left on the Table Every Year

At least $10 billion in corporate matching funds go unclaimed each year, oftentimes because the employees are not aware of the opportunity for their employer to match their charitable gifts.

Thousands of companies match employee, spouse and retiree donations; and some even triple your donations.  What’s even better is that most companies will match contributions made at any point during the last 12 months!  

With only a few minutes of your time, you can enter your company name in our new online system to see if it matches donations.

Some companies even reimburse Cure JM for volunteer hours served.  

With our new online system, we also provide the forms or links you will need to complete your matching donation for your particular company. Sometimes it’s as simple as filling in your name and donation amount and faxing the form to Cure JM; and we take it from there.

Please take a few minutes to see if your company matches donations and double or triple the impact of your charitable giving.

If you have made a donation in the past year, please submit the appropriate matching forms to Cure JM.  Some companies have a cut-off in March for 2013 donations, so please act soon!

Click here to see if your employer matches donations

Email info@curejm.org with any questions.


Cure JM Awarded Two Prestigious Distinctions

Cure JM Foundation has achieved the GuideStar Exchange Gold participation level, a leading symbol of transparency and accountability provided by https://staticapp.icpsc.com/icp/loadimage.php/mogile/735220/b17aff526fa675dcef739525cc0d8b6c/image/jpegGuideStar USA, Inc.

The Gold Level is GuideStar’s highest level attainable, and is awarded to nonprofit organizations that demonstrate a commitment to transparency and accountability.  Less than 2% of the GuideStar Exchange participants have received the Gold level distinction.

"Cure JM has always demonstrated a commitment to transparency about our mission and finances,” said Mitali Dave, President of the Cure JM Board of Directors.  "It is important for the Cure JM community to know that their support is making a direct impact in the fight against Juvenile Myositis.”

Cure JM also has been honored with the prestigious Top-Rated Nonprofit Award by GreatNonprofits for the past four years.  GreatNonprofits is the leading provider of user reviews about nonprofit organizations. 

https://staticapp.icpsc.com/icp/loadimage.php/mogile/735220/a5dc18b5ad7f3c90b145e28bd031f2d3/image/jpegSays Great Nonprofits staff, “We are especially thrilled to recognize the great work of your organization, given that less than 1% of eligible nonprofits have received this distinction.”

Cure JM made the Top-Rated list because of many positive reviews about our work from donors and partners. Says one reviewer, “Cure JM Foundation was my flashlight in a pitch dark tunnel. I am grateful for the endless information, support, and knowledge I find there.”

“Savvy donors want to see the impact of their donations more than ever,” said Perla Ni, CEO of Great Nonprofits, “People with direct experience with Cure JM have voted that the organization is making a real difference.”

The reviews by volunteers, clients and other donors show Cure JM's on-the-ground results.  This award is a form of recognition by the community.

Read more about Cure JM’s accomplishments here.  


JM Dad Featured on Huffington Post 

Common Cure for Rare Diseases: Knowledge

    Written by JM Dad Kevin McKeever; a version of this post ran on the Huffington Post and his blog, Always Home and Uncool.

February 28 was Rare Disease Day, an annual international event that aims to raise awareness about the thousands of under-the-radar diseases that significantly impact people's lives. My daughter is one of those people.

Our pediatrician admitted he'd never seen it before. For this odd rash on our 2-year-old daughter, he sent us to a dermatologist.

The second doctor wouldn't admit to anything. He rattled off the names of several conditions, none seemingly worthy of applying his bedside manner, prescribed antibiotics and showed us out.

The third doctor admitted she didn't know much. Tests on the chunk of skin she ripped from our daughter's knee showed just generic signs of an "allergic reaction."

The fourth doctor had just spotted the limp blond cherub in my lap when she admitted she knew too much. She gathered a gaggle of med students and pointed out each telltale symptoms.

The facial rash resembling a butterfly's silhouette.

The purplish-pink spots and smears on her eyelids.

The reddish alligator-like skin puffing over her knuckles.

The increasing muscle weakness in her legs and upper body.

An assistant brought in some pages photocopied from a dusty textbook. She handed them to my wife, whose birthday it happened to be that day. That was my wife's gift that year -- a diagnosis for her little girl.

Our daughter has juvenile dermatomyositis, part of a family of rare autoimmune diseases that can have debilitating and even fatal consequences. That first year with this disease none of us had ever heard of before consisted of intravenous infusions, staph infections, pulmonary treatments and worry. Surgeons implanted a feeding tube through her stomach wall because her throat muscles were too weak to swallow food and drink properly. They later added a port into her upper chest to give doctors and nurses easier access to her veins because the constant need to draw blood or give IV meds was otherwise too difficult on someone with tiny blood vessels. She temporarily lost her ability to walk. We would prop pillows against her so she wouldn't fall over while sitting on the couch while the medicine or nourishment dripped from a bag into her body.

That was almost 12 years ago. My daughter, now 14, remembers little of the pain and struggle and fear she went through, especially not when she's taking dance three times a week, or practicing her guitar or wrestling her little brother. The reminders are everywhere, though.

A twice-daily array of pills.

A monthly six-hour IV drip of a refined human blood product.

Quarterly trips halfway across the country to visit a specialist.

Yearly two-day infusions of a powerful med that destroys certain cells in her blood thought to rev up with disease.

Small scars from surgeries on her chest and belly; worse ones from the inflamed blood vessels that ate through the skin under her right arm.

And then there are things that cannot be seen, the invisible but indelible. The memories, the fears -- some spoken, some buried -- the long-term helplessness etched into me and my wife.

What would have happened if it took us more than two months and four doctors before we lucked into a diagnosis for our little girl? I don't want to know.

I do know that I'm glad that fourth doctor, the one who recognized this medical oddity, made sure her students studied my daughter so one day they might also be able to help other parents struggling to find an answer to the mysterious illness overtaking their precious child.

Juvenile dermatomyositis and its "root" disease juvenile myositis are among the 7,000 conditions classified as "rare" because each affects fewer than 200,000 people, according to the National Organization for Rare Diseases (NORD). However, when looked at as a whole, about 30 million people in the United States -- that's 1 in 10 Americans -- have one of these conditions. That's an abundance lot of rarity.

So for the millions out there struggling like we were 12 years ago to get a proper diagnosis, treatment or even just basic information on one of these many "rarities," please spare a few minutes to read up or spread the word about Rare Disease Day so others may possibility be spared the heartbreak of the unknown. As the NORD slogan says, "Alone we are rare. Together we are strong."

 

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