Cure JM Foundation Newsletter

WHAT'S NEW

• Kory's Quest for a Cure
• Take Care of Yourself in 2011
• 2011 National Conference
• End of Year Donation

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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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

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

FEATURED STORY

Happy Holidays and A Look Back on 2010

Happy Holidays!  We hope your holidays are filled with good times with family and friends and, most importantly, that you enter 2011 refreshed and recharged!

We here at the Cure JM Foundation thank you for your tremendous support this past year.  Despite a weak economy, Cure JM raised nearly $750,000 – and we still have 3 weeks remaining in the year!  These funds helped us continue to fund two JM centers of excellence and a new pilot genomic study.  Our single biggest cash infusion was winning the huge $250,000 Pepsi Refresh Grant - increasing awareness of Cure JM to levels never before reached. 

In part as a result of the exposure from winning the Pepsi Refresh grant, our patient registry gained 20% more new families this year vs. new families in the prior year.  It is hard to believe what began in 2003 with two families is now over 900 families strong!

We are also very excited to report that Dr. Lauren Pachman has been awarded a prestigious R01 grant from the NIH/National Institute of Nursing Research for her study entitled "Disease Chronicity in Juvenile Dermatomyositis (JDM): Epigenetic Clues."  Dr. Pachman heads the Cure JM Program of Excellence in Juvenile Myositis Research at Children's Memorial Research Center, Chicago.  Her laboratory, which has been supported by Cure JM since 2007, will collaborate with other researchers to complete the $1.9 million project, focusing on the quality of life of children with JDM as correlated with their epigenetic status.  Cure JM is thrilled to have funded the pilot study which led to this significant grant which may ultimately lead to more effective medical interventions for our children.

Make Taking Care of Yourself a Priority in 2011

Caregivers are often overwhelmed by the extra burdens of having a child with JM, whether it be helping your child cope with JM, keeping on top of his/her medical care, finding a way to pay the bills, or just managing your own anxiety about the child’s future.  The best thing you can do for all your children is to make taking care of yourself a priority.  You cannot take care of others, if you yourself are run down.

Here are some suggestions to help with self-care.

• Go easy on yourself.  An immaculate house or the ideal holiday or a perfect physique is just not that important right now.  Learn to embrace imperfection.
• Accept and actively solicit help.  Family and friends want to help, but often do not know how.  Also, if you can afford it, outsource what you can to ease your load.  Some areas where you may want help: in-home nursing care, childcare, meals, house-cleaning, yard work, grocery shopping, errands.
• Take care of your body.  Eat well, get enough sleep, and schedule your routine medical/dental/eye appointments.  Eating well is a particular challenge if you find yourself going from one appointment to the next or sitting around waiting for hours for an infusion.  Try to pack healthier meals and snacks in a cooler the night before, so you are not tempted to eat out as often.
• Find healthy ways to recharge.  Deep breathing, meditation, exercise, listening to music, reading a book, journaling, talking to a good friend – all help relieve stress.
• Seek professional counseling.  Having a child with a chronic life-threatening disease is emotionally draining.  A trained therapist can help you cope, and starting in 2011 health plans that offer both mental health benefits and medical benefits are required by law to offer them at parity.  The new law prohibits imposing more restrictive financial requirements (e.g. co-pays or deductibles) or treatment limitations (e.g. day or visit limits) on mental health benefits than those applied to medical benefits.  If your insurance does not cover mental health, you may wish to seek out counseling through a church.
• Count your blessings.  It is easy to sink into depression thinking about all the things that are not going well, but if you focus your mind on the positive, you will gain the strength you need to persevere.  Attitude is everything.
• Strike a blow at JM.  Sign up for the Seattle Half Marathon / Marathon in June 2011 and raise money for a cure.  As Suzy Clement, a mother of a JM child says, “I was the most unathletic person ever until about 2 yrs ago when Shari Hume (Cure JM) sent an invitation to run at the annual conference. It came at just the right moment, and it terrified me, but I signed on.  It has transformed my life - truly. Two years later, I am still running, and I have raised (with lots of help) over $40K for Cure JM.  It helps me physically, emotionally, and makes me feel like I've struck a blow against this disease. Very empowering.”

End of Year Tax Deductible Donations / Company Matching

The Cure JM Foundation is committed to continue funding research for a cure.  While we celebrate our successes, we recognize that we are still a long way from a cure.  And for every child who reaches drug-free remission using the latest research-based treatment protocols, there are many others who are still struggling – year upon year, and flare upon flare - to regain some semblance of their pre-diagnosis lives.

We ask that as you make your end-of-year charitable donations, you keep Cure JM Foundation at the top of your list.  What better gift is there than giving hope for a cure for the child in your life with JM?

Please check if your company has matching donations program, so you can double your impact.

To make personal tax-deductible donations* to Cure JM:

1.       Send  a check made out to Cure JM Foundation to:
836 Lynwood Drive
Encinitas, CA 92024
Send this printable, mail-in form along with your check:
http://www.curejm.org/donate/cure_jm_donation_form.pdf

2.       Donate online with your credit card or check card at: http://www.curejm.org/donate

3.       Donate to Cure JM as a gift to friends and family members, and have a holiday card designed by Mason, a child with JM, sent via mail or email to acknowledge your donation in their honor:
http://www.curejm.com/holiday_card/holiday_card.htm

To ask your friends and family to make tax deductible donations* to Cure JM:

1.       Set up a personal fundraising page at http://www.firstgiving.com/curejm and send the link to your personal fundraising page in your holiday letter / email.

2.       Set up a Holiday Wish for Cure JM Foundation (official): http://wishes.causes.com/?bws=causes_header
Select Holiday Wish and follow prompts, selecting Cure JM Foundation (official) as the cause.  Then, share on your Facebook newsfeed, send a holiday wish invitation via Facebook, and email the link to your friends who are not on Facebook.

3.       Direct friends to the Cure JM website to donate directly to Cure JM.
http://www.curejm.org/donate

* Cure JM Foundation’s Tax ID number is 35-2222262.  For more information regarding donations, please call 760-487-1079 or email donations@curejm.com.

Thank you on behalf of all the children and families affected by JM!