“Matters of the Heart” • 2013 Page 1

2013 Volume 15 • Number 1

hey say everything happens for a reason and my ex-perience with having a sibling and two children born with Congenital Heart Defects (CHD) has been a true

gift of awareness. Despite doctors informing me that CHD’s are not hereditary; both my mother and I shared the loss of a child to CHD’s.

My sister, Tamika Emily passed away when I was two years old. Since I was young at the time and didn’t understand what really happened to Tamika, I grew up knowing my sister passed away because of a “hole in her heart”. Each year around her birthday I recalled my mother being sad. As I grew older, she reminded me of how my sister died and that she is in heaven. Little did I know, I would one day experience my mother’s loss of a child to CHD and understand her grief.

My husband and I were blessed with the birth of our second daughter, Jordyn Rose on Friday, November 12, 2004, a warm fall day. She was our perfect princess with beau-tiful curly brown hair, big almond shaped brown eyes and weighed 6 lbs. 8oz. Everything was wonderful with our new baby and we were anxious to take our new addi-tion home. The next day, we introduced our new bundle of joy with pride to several family members and friends. I remember how she puckered her little lips after each feeding, as though it was the best thing she ever tasted. I recalled how she stretched her big brown eyes to look at us and everything she saw. Late Saturday evening our pediatrician came to exam Jordyn and to prepare the discharge papers for the next morning. When she returned from the examination in the nursery, she informed us that she heard a slight heart murmur. She stated an echocar-diogram (ECHO) was scheduled for next the morning and not to worry. Immediately, my heart began to sink and thoughts of my sister, Tamika rushed through my mind. Jordyn appeared healthy, her color was perfect and she acted normal like my other newborn girls, nursing and sleeping.

On Sunday, our day to go home, I dressed my baby girl in a cute dress and placed a hair bow in her hair. Jordyn smiled for her first set of pictures taken right before the technician

came to take her for her echocardiogram. The Echo results revealed Truncus Arteriosus, a very severe heart defect. She was rushed to Children’s Healthcare of Atlanta (CHOA) for immediate emergency surgery. Everything was happening so fast. It seems one minute I was dressing my new baby to take newborn pictures and the next we were in an ambulance on our way to CHOA. Jordyn had open heart surgery when she was four days old. She struggled to recover and survive. The first week following her surgery, she was on ECMO. This pre-

vented the doctors from closing her chest for 19 days due to the excessive swelling. One month after her birth, Jordyn passed away. We were devastated.

Years later, we were blessed to be expect-ing another baby. My doctors monitored my pregnancy very closely because of Jordyn’s CHD. My monthly visits to the perinatologist included frequent fetal echo-cardiograms and genetic testing. I enjoyed my pregnancy and prepared for the birth of another healthy baby girl. On a beauti-ful Sunday, February 19, 2012, our fourth daughter, Jia Irie was born. Irie means to be

at peace, no worries. She was beautiful, peaceful and barely cried at birth. Shortly after delivery, our joy immediately turned to fear when the nurse informed us that she heard a murmur and made a call to notify our pediatrician. I refused to let the thought enter my mind that our perfect baby girl could have a special heart or CHD. It was like being struck by lightning for the second time, our baby, Jia, was diagnosed with Tetralogy of Fallot when she was only one day old. This was a complete shock and we were terrified Jia would suffer the same fate as our little angel, Jordyn.

It wasn’t long before we learned this CHD experience would be different. Jia spent three days in the special care unit and was discharged after only five days in the hospital. There were mixed emotions when we were allowed to bring Jia home both happy she was coming home and scared about what the future held for her with her special heart. Hopeful and thankful, Jia had her initial repair in July 2012, and will need a repair of her pulmonary valve when she is older. She celebrated her

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Page 2 2013 • “Matters of the Heart”

by Megan Van Pelt, CHF President

President’sMessage

he past year has been another exceptional year for The Children’s Heart Foundation. What started as a dream in the eyes of our founder, Betsy Peterson, continues

to evolve and make a lasting impact. In 2012, we funded over $770,000 in research to eight world-class institutions. This brings our total funding to 52 projects with over $5.3 million.

Currently, we have incredibly dedicated chapters in thirteen states. A special thank you to all of these volunteers who help make our mission a reality. We are excited to see the continued growth of the chapter structure in 2013.

Our Congenital Heart Walk program also continues to ex-pand, entering new cities and growing in size. The enthusiastic committees, individuals, families, teams and spon-sors involved in the walks continue to impress us with their creative fundraising ideas and their dedication to “Uniting to Fight Congeni-tal Heart Disease”.

During February, Heart Month, we had severa l exciting fundraising and awareness events across the country, including our fourth year of partnership with Build-A-Bear Workshop. Build-A-Bear Guests had an opportunity to make a contribu-tion to CHF at store registers and online. Over the four year national partnership, CHF has received over $750,000, with every penny funding congenital heart defect research. We look forward to continuing our partnership with this incred-ible organization.

We cannot succeed in our mission without the continued sup-port and dedication of our chapters, volunteers, and sponsors. With your help, we can continue to drive awareness, build our base of national corporate sponsors and continue to achieve our goal to fund the most promising research to advance the diagnosis, treatment and the prevention of congenital heart defects, the world’s most prevalent and deadly birth defect. Thank you to all of you!

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his year we marked the 4th season of our signature event, the Congenital Heart Walk. Since launching this exciting program in 2010, we’ve experienced tre-

mendous growth by uniting communities across the US in the fight against congenital heart disease. Last year in partnership with the Adult Congenital Heart Association, we held 23 walks raising an astounding one million dollars. At each walk the entire community of pediatric and adult patients, families, health care professionals and philanthropic companies joins together to fundraise and raise awareness of CHDs. This year we will hold 26 walks and have already raised $500,000 through the end of April. A special note of appreciation goes out to all of our Walk Chairs who have done an outstanding job in leading their committees in planning and orchestrating such successful events.

For more information on our Congenital Heart Walk program, please visit www.CongenitalHeartWalk.org. If you would like to bring a walk to your community, please contact Ellen Weiss at EWeiss@ChildrensHeartFoundation.org.

Congenital Heart Walks

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For a Reason, continued from page 1

first birthday February 19, 2013, and is a joy to our family. She enjoys laughing and playing Ring around the Roses with her big sisters, Janyla and Jenesis.

My experience with CHD’s has been a blessing and opened our eyes to the challenges families face with children of special hearts. I am fearful of my strong family history of girls with CHD’s and its effect on my future generations despite studies reporting CHD is not a hereditary trait.

Since I believe everything happens for a reason, my husband and I decided to share our story to help encourage other fami-lies with children of CHD. We started the Georgia Chapter of The Children’s Heart Foundation to support the organization’s mission in funding congenital heart research and the advance-ment of treatment and diagnosis of congenital heart defects. The Georgia Chapter of The Children’s Heart Foundation will host a Masquerade Event on October 27, 2013, at The Solarium at Old Scottish Rite, 321 West Hill Street Suite 1-A, Decatur, GA, 30030 beginning at 7:00 pm. For additional information, please contact Cherise at chfga@childrensheartfoundation.org. To read more about our story visit my blog www.Super-momatheart.com.

“Matters of the Heart” • 2013 Page 3

The Medical Advisory Board UpdateCarl L. Backer, M.D., Chairperson

he Medical Advisory Board of The Children’s Heart Foundation met at the Aloft Hotel near the

O’Hare Airport on Saturday, October 27, 2012 There were 23 members of the

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Second Year Funding Title of Research Proposal Principal Investigator Institution Funding

Micro RNAs Unique to the Stressed Right Ventricle Daniel Bernstein, M.D Stanford Medical Center $ 100,000

Linking the Congenital Heart Surgery Database of the Society of Thoracic Surgeons with the Congenital Heart Surgeons’ Society Database

Jeffrey P. Jacobs, M.D Congenital Heart Insititute of Florida All Children’s Hospital

$ 100,000

Second Year Funding Title of Research Proposal Principal Investigator Institution Funding

Late Functional Status of a cohort of Survivors with Critical Aortic Stenosis: A Congenital Heart Surgeons Society Study

Brian W. McCrindle, M.D., MPH

The Hospital for Sick Children, Toronto $ 96,829

Efficacy and durability of embolization of systemic-to-pulmonary collateral vessels in superior cavo-pulmonary connection patients prior to Fontan completion

Andrew C. Glatz, M.D The Children’s Hospital of Philadelphia $ 72,719

Development of a Cell-based therapy for Congenital Complete Heart Block Douglas Cowan, B.Sc., M.Sc., Ph.D

Children’s Hospital Boston $ 100,000

Transcriptional Profiling of Pediatric Cardiac Stem Cells Conrad Epting, M.D. Northwestern University $ 100,000

Continued on page 4

No Cost Extensions Title of Research Proposal Principal Investigator Institution Funding

Investigation of Optimal Timing of Blood Transfusion during Neonatal Cardiopul-monary Bypass in Order to Minimize Inflammatory Response and Limit Blood

Ross Ungerleider, M.D Brenner Children’s Hospital/Wake Forest

Hepatic Function in Single Ventricle Congenital Heart Disease before and after the Fontan operation

Meryl Cohen, M.D Children’s Hospital of Philadelphia

The other second year funding that was discussed and recommended no cost extensions were:

New Grants

In 2012 we received a record of 35 new grant applications! All grants were reviewed and scored by the Medical Advisory Board prior to the meeting. We reviewed the top 15 scoring grants at the meeting. The top 4 grants as scored by the Medical Advisory Board after peer discussion are described below. These grants in rank order are:

Second Year Funding

We discussed and recommended funding for the following grants based on their first year progress report:

Medical Advisory Board and chapter presidents from around the country who were present for the meeting. At the meeting we discussed: 1) recommendations for second year funding for grants that were originally funded in 2011, 2) 35 new grants proposed for funding in 2013, and 3) the membership of the Medical Advisory Board.

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Membership of the Medical Advisory Board

We then discussed the make-up of the Medical Advisory Board. Dr. Todd Camenisch has requested to resign from the Board because of other commitments. New Medical Advisory Board members include:

Dr. Meryl Cohen, The Children’s Hospital of Philadelphia,

Dr. Mitchell L. Cohen, Arizona Pediatric Cardiology,

Dr. Gul Dadlani, The University of South Florida,

Dr. Jennifer Hirsch-Romano, The University of Michigan,

Dr. Sara Pasquali The University of Michigan in Ann Arbor.

The meeting concluded at 3:00 p.m. with the above recom-mendations being sent to the Executive Board of The Chil-dren’s Heart Foundation. The Executive Board approved the recommendations at the December meeting.

Medical Advisory Board, continued from page 3

Chapter Development

n 2013, we welcomed the state of Georgia on board as our newest Chapter. Georgia Chapter Founding Presi-dent, Cherise Gunnerson, a two time heart parent and

heart sibling joins us with a wealth of passion for advancing congenital heart defect research. Please read Cherise’s story which is highlighted as the cover article. With the addition of Georgia into the fold, we now have thirteen active CHF Chapters all fundraising, promoting awareness and advocating for congenital heart disease.

If you do not have a CHF Chapter in your state and are inter-ested in forming a Chapter or getting involved in any capacity, please join us at one of our upcoming Introductory Seminars. Each seminar is a one hour interactive presentation where you will learn about CHF’s mission, organization, financials, research funding process, and volunteer opportunities. All upcoming seminars are on Wednesdays at 1PM ET and again at 8PM ET on the following dates:

July 17, August 14, September 18, October 16, November 13, and December 11

Please email Ellen Weiss at EWeiss@ChildrensHeartFounda-tion.org for more information or to attend a seminar.

Ihe Arizona Chapter has been busy! During the first half of the year, the Arizona Chapter has been active in raising awareness of CHD’s as well as CHF’s mission.

January saw us at the Tempe Arts Center where we attended the YelpHelp Event. February we were off to the Scottsdale Build-A-Bear Store in support of the month-long fundraising partnership. March we held an informational session at the Nick & Kelley Zoo Day at the Phoenix Zoo. In May, we par-ticipated in two awareness events: The Mended Little Hearts Resource Fair and the Junior Achievement Golf Tournament where we participated as a sponsor.

We start up again in November with our 4th Annual Congeni-tal Heart Walk which will take place on November 3, 2013. On December 13, 2013, we will be hosting our 4th Annual “Valley of the Sun” Golf Outing at Grayhawk Golf Club. And we are very excited to announce our signature event is back. “A Heartfelt Affair” will be held on February 9, 2014. For more information on these exciting events, please visit our website at arizona.childrensheartfoundation.org.

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“Matters of the Heart” • 2013 Page 5

Connect with CHF on Facebook, Twitter and YouTube.Use the links below to Connect with CHF on Facebook, Twitter and/or YouTube.

facebook.com/TheCHF

youtube.com/CHFnational

@TheCHF

he Rocky Mountain Region has been busy this year. We participated in the Fort Collins St. Patrick’s Day Parade thanks to our sponsors at Markley Motors

and Wilbur’s Total Beverage. Everyone had such a great time raising awareness for CHD and, for some families, meeting other CHD families for the first time, that we plan to make it an annual event.

Wilbur’s owner, Mat Dinsmore, worked hard at organizing our May in-store fundraiser. Last year Wilbur’s alone raised over $4800 for CHF Colorado. This year, he’s found four more liquor stores across the state to participate. Shoppers love to support a local organization, and we love to spread awareness while raising critical research dollars.

We are planning our September Congenital Heart Walk with our amazing and inspiring partners from the Adult Congenital Heart Association. As we continue to grow, we are grateful to all of our passionate board members, volunteers and donors. We couldn’t do anything without them!

For more information visit our website: colorado.childrens-heartfoundation.org.

Colorado Chapter

he Florida Chapter kicked off 2013 with its 4th Annual Congenital Heart Walk in Tampa. Approximately 200 CHD patients, families and healthcare profession-

als descended on Al Lopez Park raising $25,000 for CHD research and much CHD awareness. Many thanks go out to Walk Co-Chairs Jennifer Rains and Katrina Scoglietti for coordinating such a successful event. Just three weeks later, we held the Inaugural Jacksonville Congenital Heart Walk

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which brought together an astounding 300 people to the campus of the University of North Florida and raised more than $25,000. Our hats go off to Melissa Hartman and all her supportive students at UNF for organizing a top notch event. Our final event for 2013 will be the Inaugural South Florida Gala in the fall.

The FL Chapter extends much appreciation to Nicolle Van-Valkenburg and her wonderful family for their ongoing sup-port of CHD research. In October 2012, the VanValkenburgs held the 4th Annual Bryan VanValkenburg Memorial Golf Tournament at the Venetian Bay Golf Club in New Smyrna Beach, Florida. Over the past four years, the Van Valken-burgs have funded over $70,000 in CHD research in Bryan’s memory.

For more information on the FL Chapter, please contact Jen-nifer Rains at CHFFL@ChildrensHeartFoundation.org.

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012 was a year of growth for the Michigan Chapter. We increased our fundraising efforts, partnered with the state’s department of community health to promote

CHD awareness and expanded our Board of Directors.

In July, the chapter’s annual “Scoop for Hearts” sponsored by Culver’s of Clarkston and Oakland County Parks and Rec-reation brought families together for a day of bounce play, pony rides, carnival games, and frozen custard to help support CHF’s mission. Then in October, our second Congenital Heart Walk doubled the number of participants and fundraising dollars from the previous year—more than 600 walkers, along with community sponsors like Macy’s, raised over $62,000 for CHF and ACHA. We are very grateful to the Clinton Township Area Optimist Club in November for choosing CHF as the beneficiary of its “Tastefest & Variety Show.” Hundreds showed up for an evening of delicious food, raffles, and live entertain-ment to help raise money for CHD research. We thank all those who helped make these fundraising events a success!

In an effort to raise statewide awareness, we became a partner organization with the Michigan Department of Community Health (MDCH) for this year’s CHD Awareness Week. We continue to support MDCH on its newborn screening pro-gram for critical congenital heart disease, which we’re happy to see many Michigan hospitals voluntarily implementing.

This year’s Congenital Heart Walk of SE Michigan will be held on Sunday, September 29th at Depot Park and will feature a new 5k fun run! We hope even more participants will unite

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n June 7th, the Tenth and Final Gala “Forever in our Hearts” Summer Celebration, in loving memory of Isabel Rose Agne was held. This event took place at the

Hyatt Lodge in Oak Brook, IL. The Celebration started at 7:00 pm and included cocktails, dinner buffet, live entertainment, raffles and a silent auction. Our Heartfelt thanks goes out to the Agne family for their continued support, generosity, and commitment to CHF!

The 2nd Annual Congenital Heart Walk was held on Saturday, June 15, 2013, at the Lincoln Park Rowing Lagoon in Chicago. Not only did the walk raise over $35,000, it increased aware-ness of the CHD community. A special thank you to Jaymi Griesmeyer and Jennifer Mowen for co-chairing this event on behalf of CHF.

For the first time, the Illinois Chapter participated in the “Chicago Urban Race”, a scavenger hunt in the heart of Chi-cago, on Saturday, April 27th. A total of 281 participants - 90 teams - raised over $2,000 and brought awareness of CHF to a new demographic. The feedback from participants was overwhelmingly positive and complimentary, saying it was “great fun” and “very well-organized.” Credit to Byron Yip and AnnaLisa Daniele for leading this great event.

The Illinois Chapter held its annual family benefit, “Hearts at Play”, on February 23rd, 2013, at Chicago’s Museum of Science and Industry. Over 600 attendees enjoyed a special evening in celebration of the many CHD children in attendance, and raised nearly $35,000. A special thank you to event chairs Nirali Rodriguez and Carly Kustra.

The 14th Annual Golf Outing will be held on Monday, August 19, 2013, at Conway Farms Golf Club in Lake Forest. Last year’s event raised more than $90,000 and this year the com-mittee has goals to exceed last year’s great success. Please mark

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Illinois Chapteryour calendars for this great event. To register for the event, please visit: illinois.childrensheartfoundation.org

For more information visit our website: illinois.childrens-heartfoundation.org.

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he Missouri Chapter grew by leaps and bounds since our last publication! We boast four new board mem-bers: Ryan Wilhelm CIA, CFE, CRMA, Nestle Market

joined as our new Treasurer, Jay Steinback, owner of Rothman Furniture comes with extensive professional board experience, Jaime Seitrich joins as a marketing specialist from Edward Jones, and Jenn Hinkle comes to us with a strong background in event planning and restaurant marketing.

On August 26, 2012, we held our second Congenital Heart walk and plans are underway for our 2013 walk. Sponsorships have already secured $6,500 and Hardee’s is donating their traveling Food Mobile for the second year in a row.

The Missouri Chapter participated in the Build-A-Bear Work-shop kick off at West County Mall. The branch hosted several children who enjoyed building their heart bears and passed on memories to last a lifetime.

We held our third annual Trivia Night on April 6, 2013 at the donated Edward Jones Corporate Office, raising $22,000 for congenital heart research. We thank our presenting sponsor, St. Louis Children’s Hospital Heart Center, for the generous donation and support. Four hundred and fifty people par-

Missouri Chaptermissouri.childrensheartfoundation.org

The New York Chapter kicked off the year with the 1st Annual NYC Congenital Heart Walk. The walk was originally planned for November 2012 but was im-

mediately postponed due to the effects of Hurricane Sandy. The walk took place at The Norman Thomas High School and the NYC CHD community rallied! We raised $60,000, connected with families and raised much needed awareness in the Big Apple!

During Heart Month, we graciously received a donation from our Chapter Sponsor, “Work of Heart Preschool”. The preschool recently chose The Children’s Heart Foundation as their charity for which we are grateful!

Also in February, the Agora Gallery in NYC held the “Art to Heart Exhibit”. Artists in the February exhibition created a collection of small works specifically made to honor little hearts all over the world. The proceeds from the sales of these particular pieces of art were donated to The Children’s Heart Foundation.

Just when you thought the New York Chapter was done for the month, our 2nd Annual Cardio Challenge took place on Feb-ruary 19th. Gold’s Gyms of Smithtown/Deer Park and Howard Beach held our events in which our participating teams ran, walked & crawled on treadmills for a total of 3 hours to see who could rack up the most mileage! It was a fun event that funded almost $20,000 for CHD research.

March came in like a lion but softened for “A Gift FOUR Our Children”. A young man with a heart of gold chose our founda-tion as the beneficiary of not only an evening at the restaurant FOUR but also at a Zumba event during the first week of May. Brandon Buie and his crazy cardio cohorts raised $7800 for CHF and they’re not done. Brandon plans to hold the “Gift FOUR Our Children” event again this summer and another Zumbathon this fall. We cannot thank him enough!

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to fight CHD by pounding the pavement with us once again in the historic Village of Clarkston.

Lastly, we’re excited to announce the expansion of our Board of Directors. We welcome Mary Brown as Secretary, Ev-elyn McKenzie as Treasurer, and Melonie Stothers as Board Member. They have been implemental in growing the Michi-gan Chapter. We also thank our MAB members, as well as Beaumont Hospital, University of Michigan’s C.S. Mott Chil-dren’s Hospital, and Children’s Hospital of Michigan for their continued support.

For more information about the Michigan Chapter and our events, please visit http://michigan.childrensheartfoundation.org or follow us on facebook. We look forward to another great year of fundraising and advocacy as we carry out our mission.

ticipated in an evening filled with laughter, music from Jason Seitrich, door prizes and fabulous auction items. The generos-ity of Mercy Children’s Hospital, Hardee’s, ITC for the Audio Visual set up, Nestle, Dierbergs Market Des Peres, Anheiser Busch, Colby Red Wine, Chandler Hill Wine, TricorBraun, Kohl’s Cares, along with an impressive list of 40 silent auction items added to our success. This event was made possible by the strategic planning of a dedicated group of volunteers and board members. We also thank the UMSL Sigma Pi group lead by Zach Littrell and Angie Farrell who was our event photog-rapher. Special thank you goes to Mark Krus for setting up and running the sound equipment donated by Webster University.

For more information visit our website: missouri.childrens-heartfoundation.org.

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e at the Oregon Chapter are excited about 2013!

We have recently welcomed four new board members, Nancy Mitchell (a heart parent), Tanya McLean, Robin Fern-strom, and April Mayers. We are excited by their energy and new ideas.

We started out the year with a very busy February. First, our friends at the Ruby Jewel Ice Cream Shop made a special ice cream flavor for CHD awareness month, homemade raspberry jam swirl with shortcake cookies. It was absolutely delicious. To kick off the month, Ruby Jewel hosted an ice cream social at their downtown location for CHD kids and families. We had a great time, and reconnected with some of our heart community. We appeared on a local morning show, Good Day Oregon, along with the owner of Ruby Jewel, to discuss CHDs and ice cream. Ruby Jewel was very generous, donating a portion of their proceeds during the month to CHF.

Next, we hosted our first annual Vinolympics. This was a fun

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hio has been busy this year with many projects. We welcomed a new Vice President, Bobbi Jacobs to our

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Board, and also participated in various Davis Heart and Lung Research Institute events at Ohio State University. Bobbi and Karen Clifton also organized and hosted a wonderful family fun event including a Chili cook off. We continue to host host 3 Congenital Heart Walks: Cincinnati, Cleveland, and Columbus. These areas are so much fun, and we raise over $100,000 every year for Congenital Heart disease. Addition-ally, we participated in many events, including the 2nd Annual Children’s Heart Foundation Volleyball Tournament through the Morgan Stanley employees at the Easton Service Center in Columbus, OH. 11 teams participated and raised $1,423. As the event came to a close, it was good see that the human spirit is alive and well – that folks actually do care about each other’s well-being. Though we may all lead busy, hectic lives, there is time to support a worthy cause. That’s what it means to be an active participant in life, rather than a casual spectator. Thank you to all our Ohio volunteers.

Our 3rd Annual Congenital Heart Walk – Long Island took place on May 18 and we raised over $80,000. The outpouring of our medical community is astounding. We had 7 hospitals that supported our cause. The ACHA and CHF in NY work so well together. We have so many wonderful volunteers, generous sponsors and have been touched by so many CHD families. The Congenital Heart Walk – Long Island was a huge success.

We’re so excited for all that awaits our New York Chapter. mud runs, toy drives, zumbathons, etc. It all goes to one place and that place is The Children’s Heart Foundation. For New York to be a part of the CHF mission, we’re so very proud.

We are always looking for volunteers; if you are interested in joining us please contact us at CHFNY@childrensheartfoun-dation.org or visit our new website: newyork.childrensheart-foundation.org.

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CONGENITAL HEART WALKS: We are happy to add a third heart walk to PA’s list of walks. The Hershey Heart walk took place on May 4th at Penn State Hershey Medical Center. They kicked off the walk with a Golf Outing on April 19th to raise funds for the walk.

The second annual Pittsburgh Heart Walk was held on June 22nd at the Boathouse at North Park. Pittsburgh hosted a kick-off Happy Hour Fundraiser for the CHW on April 25th at Peter’s Pub in Oakland. They hope to top last year’s first Pittsburgh walk total of $60,000!

The fourth annual Philadephia/Delaware Valley walk, hap-pened at Wilson Farm Park in Chesterbrook on June 9th and raised over $69,000. In March, the walk received $1,400 toward fundraising from 5 year old Brighton. Instead of a birthday party, he held a fundraiser at Party Magic as a way to “fix his sissy’s heart.”

OTHER SUCCESSFUL PA EVENTS: Remember an Angel/Swing for a Survivor Golf Outing was another huge success, raising over $32,000 for CHF in memory of AJ Kahler, son of PA Board member Denise Kahler. The August outing took place in Pittsburgh at Butler’s Golf Course. Plans for this year’s outing on August 11th are underway! In September, the annual Philly Hearts event proved once again successful as friends of CHF gathered at the Merion Tribute House in a family-fun party that raised over $26,000 for CHF. The 2013 Philly Hearts committee is hard at work planning this year’s event which will once again take place at the Merion Tribute House on September 15th.

We are continuing to grow our family of volunteers around the state and are anxious to see what this year brings in our fight against CHD!

Please like our Facebook page, www.facebook.com/CHFPA. For more information visit our new website: pennsylvania.childrensheartfoundation.org.

night at Davis Street Tavern in Portland, filled with wine, and wine-focused games. We brought our friends, supporters, and adult heart community together, and brought the competi-tiveness out of everyone with games like blind wine tasting, wine bouquet identification, and wine and food pairing. The ultimate winning couple walked away with lots of wine, and the event was a big success, meeting our fundraising goal of over $5,000. We are already practicing our skills for next year.

We found time in the month to make it to both of the Build-A-Bear locations in Portland with some of our CHD kids and had a great time making such friends as Tim the tutu-wearing bear, Lucy Popcorn the dog, Stripes the leopard, and Tinker-bell Ariel the cat. Thanks to our friends at Build-A-Bear for all your support.

Finally, we participated in two CHD awareness and fund raising events. First, we were chosen by Graybar, a supply chain management company, as their charity of choice for their Seattle trade show. We had a booth at the two day show, and in addition to a corporate contribution from Graybar, we collected over $400 in cash from the generous trade show participants. We were also selected by Saint Mary’s Academy, a private school in Portland, as one of their charities for a week-long fundraiser. The students brought in coins throughout the week, and the money was split between several charities. Saint Mary’s ended up donating over $2,500 to CHF. Thank you Saint Mary’s students!

Our signature event, “Lion Heart” took place on Saturday June 1, 2013 at the Portland Children’s Museum. This is our primary heart community building event, and we were excited to see all our CHD kids walk in the Parade of Courage. Also, the date for our remaining Wine Ride sponsored by our friends at Bike Gallery has been set for September 22 at Vista Hills Vineyard. The ride will be in the beautiful Willamette Valley wine country, and will be followed by wine and a delicious catered lunch. Come join us!

ur PA chapter saw the end of an era when our chapter founder stepped down as president after serving for six years. Patty Cheshire’s dedication and contagious

enthusiasm for CHF will continue to be a part of our chapter. All of us on the PA Board are grateful for her service and for making our chapter what it is today. Lori Jones has taken over as president and is excited to keep the PA chapter growing. The PA board was thrilled to welcome three new board members, Dr. Gil Wernovsky, Melissa Womelsdorf and Krista Kaufman.

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Virginia Chapter

he Virginia Chapter is in full swing. We started 2013 by adding new trustees to our board. In February, Richmondmom.com along with Downtown Short

Pump, Gundlach Plumbing and Heating and The Wine Loft got Congenital Heart Week kicked off by choosing CHFVA as the beneficiary of February’s Wine Down Wednesday Charity Fundraiser. The event brought in $800 in two hours and was a fabulous way to raise awareness for Congenital Heart Defects. We finished off our CHD Awareness week with a special table and valentines at the home game for the Virginia Common-wealth University (VCU) Men’s Basketball Team. We were able to pass along literature, give out wristbands and spectators were encouraged to fill out Valentine’s for their favorite player, to be held up during the televised game against University of Massachusetts. Frame Packaging Solutions, corporate sponsor, printed the valentines.

In April we were given the opportunity to speak to the Mended Little Hearts of Central Virginia and shared a night with them at The Diamond on May 4, where we had an informational table set up during the Richmond Flying Squirrels Baseball game.

Our Congenital Heart Walk Central Virginia was chaired by Candice Geoghegan, President Elect, and held on June 22. We are thrilled to announce that the VCU Athletic Band, The Peppas, performed at our walk and kicked off our first lap! We added an expo following the walk in hopes that it will encourage heart families in attendance to mingle and make some lasting friendships.

We are in the planning stages for our October 7 golf tourna-ment, Allison Jacobs Golf Classic, at Brickshire Golf Course in New Kent County. We are looking for sponsors and teams. Registration for the event will be available online. Early bird registration will go through August 31, $400 per team. The price will increase to $500 per team as of September 1.

For more information visit our new website: virginia.child-rensheartfoundation.org.

virginia.childrensheartfoundation.org

“It’s My Heart Book”The second edition of “It’s My Heart” is now available two ways. You can or-der a paperback version or purchase an e-book by visiting www.children-sheartfoundation.org/publications/its-my-heart. Shipping charges will occur for orders of three copies or more and the e-book can be pur-chased for $9.99.

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Texas Chapter

exas Chapter became official in November 2012. We are privileged to have a wonderful group of volunteers to sit on our Board of Directors: Sarah Berg, President;

Anna Jaworski, Vice President; Heather Oshman, Treasurer; Christie Salazar, Secretary; Ashley Forbes, Director of Fun-draising; Heather Silva, Director of Public Relations; Crystal Porter, Volunteer Coordinator; Katie Cataldo; Junior Board President and Carl Wolford; board member.

In February 2013, CHFTX was able to be par t of the C onge n i t a l Heart Defect Aw a r e n e s s Week proc-lamation in Round Rock, TX. We participated in the Build-A-Bear Workshop in Central Texas and in the Rio Grande Valley and we were honored to present them with Certificates of Appreciation for their part-nership with The Children’s Heart Foundation every February.

The Texas Chapter held a Chapter Debut Cocktail Party on February 13, 2013. We are grateful to our generous underwrit-ers; with their gifts we were able to raise $10,000. Thank you to the volunteers, which made this night possible. We presented Dr. Denton Cooley with the Smart Heart award for his innova-tion and pioneering in the cardiovascular field.

On March 16, 2013 Central Texas held the 3rd Annual Con-genital Heart Walk. We had record attendance and we raised $70,000 for CHF and ACHA. Special thanks to Dr. Greg Johnson for his ongoing support of the Walk and the Texas Chapter, we had the best volunteers and generous sponsors.

CHFTX held coloring contests to find special art work for our With Love Cards. We are proud to have a Mother’s Day, Fa-ther’s Day & Thank You Cards available to benefit our chapter.

The first half of the year ended with two events benefiting the Texas Chapter: A “Jump” for Charity” from SJRA and the Round Rock Express Baseball Game between Round Rock Express and the New Orleans Zephyrs.

We are looking forward to the next half of 2013. Looking to volunteer, or just want more information, contact us at chftx@childrensheartfoundation.org or visit us at texas.childrens-heartfoundation.org.

texas.childrensheartfoundation.org

“Matters of the Heart” • 2013 Page 11

Upcoming Events

Please join us at the events listed below. For more information, please visit our web site at www.childrensheartfoundation.orgSunday, August 11, 2013 – Elizabeth PA

The 5th Annual “Remember an Angel, Swing for a Sur-vivor” Golf Tournament in memory of AJ Kahler will be held on Sunday, August 11, 2013. For more information, contact Denise Kahler: littlegepk@aol.com

Monday, August 19, 2013 – Lake Forest, IL The 14th Annual Chicago Golf Outing will be held at Conway Farms Golf Club in Lake Forest, IL. For more information and to register visit: illinois.childrensheartfoundation.org

Saturday, August 24, 2013 – Memphis, TN 38112 Grant’s Gala 2013 will be held on Saturday, August 24th from 7:00 pm - 11:00 pm at Teton Trek in the Memphis Zoo. Tickets to Grant’s Gala 2013 are $60 per person before August 10th 2013, or $75 per person after August 10th 2013 and include food, beer, and wine. For more information and to purchase tickets, please visit: www.grantsgala.org

Sunday, August 25, 2013 –Maryland Heights, MO The Congenital Heart Walk – Greater St. Louis will take place on Sunday, August 25, 2013 at Creve Coeur Lake Memorial Park, Tremayne Shelter. Registration opens at 8:30 AM, the walk kicks-off at 9:30 AM. For more information on the Congenital Heart Walks, please visit: www.congenitalheartwalk.org

Saturday, September 7, 2013 – Cleveland, OH The Congenital Heart Walk – Cleveland will take place on Saturday, September 7th at Hermitage High School Chester E. Fritz Stadium. Registration opens at 9:30 AM, the walk kicks-off at 11:00 AM For more information on the Congenital Heart Walks, please visit: www.congenit-alheartwalk.org

Saturday, September 14, 2013 – Aurora, CO The Congenital Heart Walk – Rocky Mountain will take place on Saturday, September 14, 2013 at Generals’ Park, Aurora, CO. Registration opens at 9:00 AM, the walk kicks-off at 10:00 AM. For more information on the Congenital Heart Walks, please visit: www.congenital-heartwalk.org

Sunday, September 15, 2013 – Whispering Springs, WI The 3rd Annual Kuhnz Family CHF Golf Outing will be held on September 15, 2013 at the Whispering Springs Golf Course in Fond du Lac, WI. For more information contact Daniel Kuhnz at drkuhnz@gmail.com

Sunday, September 15, 2013 – Philadelphia, PA The 3rd Annual “Philly Hearts” a family affair will take place at the Merion Tribute House. For more informa-tion please contact chfpa@childrensheartfoundation.org

Saturday, September 21, 2013 – Cincinnati, OH The Congenital Heart Walk – Cincinnati will take place on Saturday, September 21st at Eden Park - Mirror Lake, Cincinnati. Registration opens at 8:30 AM, the walk kicks-off at 10:00 AM. For more information on the Congenital Heart Walks, please visit: www.congenitalheartwalk.org

Sunday, September 29, 2013 – Clarkston, MI The Congenital Heart Walk for the Clarkston, Mi area will take place on Sunday, September 29, 2013 at Depot Park. Registration begins at 9:00 am, the walk kicks-off at 10:00 am. For more information on the Congenital Heart Walks, please visit: www.congenitalheartwalk.org

Saturday, October 5, 2013 – Portland, OR The Congenital Heart Walk – Portland Metro will take place on Saturday, October 5, 2013 at Laurelhurst Park, Portland, OR. Registration opens at 9:00 AM, the walk kicks-off at 10:00 AM. For more information on the Congenital Heart Walks, please visit: www.congenital-heartwalk.org

Sunday, October 6, 2013 – Westerville, OH The Congenital Heart Walk – Central Ohio will take place on Sunday, October 6, 2013 at Westerville Sports Complex, Westerville, OH. Registration opens at 8:30 AM, the walk kicks-off at 9:30 AM. For more informa-tion on the Congenital Heart Walks, please visit: www.congenitalheartwalk.org

Saturday, October 12, 2013 – Plymouth, MN The Congenital Heart Walk for the Twin Cities area will take place on Saturday, October 12, 2013 at Clifton French Regional Park. Registration begins at 9:30 am, the walk kicks-off at 10:30 am. For more information on the Congenital Heart Walks, please visit: www.congenit-alheartwalk.org

Sunday, October 27, 2013 – Atlanta, GA The Georgia Chapter of The Children’s Heart Founda-tion will host a Masquerade Event on October 27, 2013, at The Solarium at Old Scottish Rite, 321 West Hill Street Suite 1-A, Decatur, Georgia 30030 beginning at 7:00 pm. For additional information please contact Cherise at chfga@childrensheartfoundation.org

Sunday, November 3, 2013 – Tempe, AZ The Congenital Heart Walk for the Phoenix Metro area will take place on Sunday, November 3 at Tempe Diablo Stadium. Registration begins at 9:00 am. For more information on the Congenital Heart Walks, please visit: www.congenitalheartwalk.org

Friday, December 13, 2013 – Scottsdale, AZ The 4th Annual Valley of the Sun Golf Outing will take place at the Grayhawk Golf Club. For more information, please contact Andy McKeague at amckeague@medix-team.com

Page 12 2013 • “Matters of the Heart”

P.O. Box 244Lincolnshire, IL 60069

(847) 634-6474 • Fax: (847) 634-4988www.childrensheartfoundation.org

Non-Profit Org.US Postage

PAIDLincolnshire, IL

Permit #45

he Children’s Heart Foundation was established in 1996 by Betsy and Steve Peterson to honor the memory of their son, Sam, who died from congenital heart disease at age eight. Today, the Foundation is a national organization

with local chapters and a network of volunteers working to eradicate congenital heart disease as America’s number one birth defect. To date, CHF has distributed more than $5.3 million through 52 research grants.

About CHF

2013 Board of DirectorsPresident – Megan Van Pelt*Past President – Leo ColeTreasurer – Rex Homme*Secretary – Chris Griesmeyer*VP Chapter Development – Todd Ford*, Tammy Thomas*VP Marketing – Mark Goble*VP Legal – Chris Griesmeyer*Founder – Betsy PetersonMedical Advisory Board Liaison – Dr. Thomas WeigelExecutive Director – William Foley*

Amanda AdamsSarah BergLori JonesJuli LegassickJason MannosLisa McGhanLori OrtbalsJackie PecoraSally PowersJennifer RainesJackie Tillman *Executive Committee

Medical Advisory BoardDr. Joseph AmatoDr. Emile BachaDr. Carl Backer – ChairpersonDr. D. Woodrow BensonDr. Christopher CaldaroneDr. Merly CohenDr. Mitchell CohenDr. Roger ColeDr. David CooperDr. John CostelloDr. Susan CrawfordDr. Bettina CuneoDr. Gul DadlaniDr. Barbara DealDr. Nancy GhanayemDr. Andrew GriffinDr. Courtney HardyDr. Jennifer Hirsch-RomanoDr. Richard HopkinsDr. Jim HuhtaDr. Jeffrey JacobsDr. Jim JaggersDr. Kathy JenkinsDr. Joseph KayDr. John LambertiDr. Marla MendelsonDr. Jane Wimpfheimer NewburgerDr. David OvermanDr. Sara PasqualiDr. David SahnDr. Kenneth SchowengerdtDr. Robert StewartDr. Kent ThornburgDr. Martin Tristani - FirouziDr. James TweddellDr. George Van HareDr. Catherine L. WebbDr. Thomas WeigelDr. Gil WernovskyDr. Vincent Zales

he goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted with congenital heart defects, the number one birth defect in the United States. We accomplish this goal by funding

the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects in children.

Saving Children’s Lives – One Heart at a Time

Our Goal

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