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Hope on Wheels Newsletter March 2015

At Hope On Wheels we’re gearing up to kick off our 17th year in the fight against pediatric cancer.  We’ve come a long way since 1998: more than $87 million has been awarded to fund innovative research with the Next Generation pediatric oncologists; hundreds of handprint ceremonies have taken place; some 600 institutions have received Hope On Wheels funding; and over 200 research studies are currently in progress.

For every one of those 17 years, our goal has remained constant: to ensure that every child diagnosed with cancer can survive the disease.  And while so much great work has been done, we never forget those kids and families who deal with this issue head-on every single day.  We must continue advancing the possibilities and moving the needle closer to our ultimate goal of finding a cure.

This year is filled with new initiatives that we hope will have a transformative effect on the important work we are all devoted to.  Stay tuned for information on major milestones and on new grant programs that we anticipate will generate a quantum shift in our progress.  We’re all working toward that day when we can say that not one more child has been diagnosed; not one more parent will hear their child has cancer; not one more child will miss a day of school or a recital or soccer game.  That will be a very special day – a day when we can be truly thankful.

We want to personally thank all of our supporters, all of you who follow us on Facebookand Twitter, and all those who so loyally attend our events each year!  In April we’ll be announcing the winners of this year’s grants and telling you about several important developments and new program features.

We are grateful for your continued support – this is a battle we will win together!

HOPE ON WHEELS TAKES MAUI BY STORM WITH THE LARGEST 5K EVENT ON THE ISLAND

IMG_0514_zps81fb6515This year’s 5K Series has begun on a thrilling high note, thanks to your spectacular support of the Hope On Wheels 5K Run/Walk in Maui on January 10.  A huge thank-you to all of you who participated in this knockout event, and to all of you who generously sent in donations.

The total number of runners and walkers who crossed the finish line was a stunning 478, making this the largest 5K event ever to be held on Maui.  And here’s more good news: from the proceeds raised, Hope On Wheels was able to donate more than $85,000 to support Kapi’olaniMedical Center for Women and Children.

We especially admire Kapi’olani for its forward-thinking approach.  Doctors there believe that teaching children about medical procedures is an important part of helping them prepare.  When a child learns what to expect during treatment for cancer, things become less frightening.

Child Life Specialists at this innovative medical center use activities like medical play, preoperative tours and pre-procedural teaching to help kids deal with their treatment and their hospital stay.

Look for more news about our activities in March. Meanwhile, be sure to follow us on Facebook for daily updates, and to keep abreast of our progress in eradicating child cancer.

The work of small handprints is the stuff of giant steps forward.  Give us your handprint … join us in this fight and we will win it together!  Click on www.HopeOnWheels.org to add your handprint now to our Wall of Hope.

JOIN US FOR THE NEXT 5K RUN/WALK ON MARCH 14 IN MONTGOMERY, ALABAMA

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Well, now we’re on a roll, let’s keep the momentum going!  Come join us for our 5K Run/Walk on Saturday, March 14, and enjoy a Southern welcome in Montgomery, Alabama.  You can check out the details and register here.

DOCTOR SPOTLIGHT | FEATURED DOCTOR: DR. LESLIE DOROS

Leslie_zps02a14f42Dr. Leslie Doros of Children’s National Medical Center in Washington, D.C., is committed to helping kids with rare cancers, and is an expert in pleuropulmonary blastoma (PPB).  This brutal type of lung cancer occurs in children under six, and is part of a hereditary cancer syndrome where an altered gene can be passed on from generation to generation, placing families at risk for PPB and also for other types of tumors.  Aggressive treatment may call for radical medical decisions.

Some 65 percent of the children affected by PPB have a specific mutation in a gene called DICER1.  Approximately 80 percent of those kids inherited it from one of their parents.  When PPB occurs as part of this syndrome, family members can also be affected by other tumor types, including cystic nephroma (CN) of the kidney and sertoli-leydig tumor (SLCT) of the ovary.

A Hope On Wheels grant has enabled Dr. Soros and her team to extend genetic testing and better characterize CNs and SLCTs as part of this syndrome.  As with PPB, approximately 65 percent of patients with these tumors have similar DICER1 alterations.

When treating a child with PPB, Dr. Doros invites the entire family to undergo comprehensive evaluation.  She is then able to provide guidance about detecting and preventing additional cases of PPB within a family, and about other medical conditions associated with PPB.

Research here has led to the discovery of a new form of kidney cancer related to this cancer syndrome.  With the establishment of screening guidelines, Dr. Doros and her team are now able to detect these cancers earlier, giving patients a better chance for cure.

At Children’s National, these pioneering doctors are making giant strides in the fight against pediatric cancer.

 

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