Spreading Awareness via Good Times

Camp LUCK PulseSUMMER 2014 QUARTERLY NEWSLETTER FOR ALL CAMP LUCK ENTHUSIASTS ISSUE THREE

Lucky Unlimited Cardiac

Want more info? Check out Facebook.com/CampLUCK & CampLUCK.com

Bike LUCK ROCKED!!Third Edition!

Welcome to the Third Edition of the Camp LUCK Pulse, a quarterly newsletter to keep all Camp LUCK enthusiasts up to date. We are spreading awareness via good times. Since the last newsletter, we have hosted the Education Symposium with 63 participants, the Annual Picnic with 250 participants, Bike LUCK with 400 involved and Family Camp with total of 205 participants (families and volunteers). Things are rocking and rolling with several new items very close to beginning!

As stated in Newsletter #2, one way to grow our awareness is for each of us to send the newsletter to a friend and say “Check out this Awesome Organization.” The more exposure and awareness, the more people we can service and impact in a positive way! Let us know how we can help you. We hope you enjoy Edition #3 of the Camp LUCK Pulse!

"First time on this ride.  Judging from the turnout, this has quickly become one of the local favorite rides in Charlotte.  I did the 100k. Nice course. The stop & go the first few miles actually keeps the group together until we get out of town. Food stops were good.  Nice to have a real bathroom out there. Post ride meal, very good.  I like to have some solid protein after a long ride.  The beer option is great.  Not many rides do that.  Good cause, good event. Thanks for putting on this ride. " -2014 Participant

“...this has quickly become one of the

local favorite rides in Charlotte.”

In only it’s second year running, Camp LUCK’s Charity Ride Bike LUCK, was a smashing success. Julia Engel, Director of Bike LUCK, along with Jeff Viscount and team, coordinated a very smooth, well run event that hosted 350 cyclists, over 50 volunteers and raised $31,900 for Camp LUCK, Inc! The event was held at Atherton Market in historic Southend on May 3rd. Festivities included a 63 mile, 30 mile and 5 mile ride along with rest stops that were themed by heart families and had home baked goods. The post ride at Atherton was filled with vendors, delicious barbeque, Triple C Brew, music and more. Thanks for all those that came out to ride and volunteer as you made this an extremely successful event.

Gavin ROCKS the mic at Kids Camp 2012.

Kid Spotlight presents...

What is your diagnosis? Leaky valve (pulmonary valve stenosis associated with Noonans Syndrome)

When did you first learn about your heart condition?  Were you born with it? Yeah, I was born with it, so I always knew my heart was broken. My mom tells me that I may have been born with a broken heart but the minute I was born I stole hers so it all evens out. I think that's funny. It doesn't really even out!

What is the hardest thing about having a CHD? Having surgery. It hurts and staying in the hospital is boring. I'm really hoping I won't have to have another one for a long time.

How is your brother affected by your CHD? He doesn't like to see me in the hospital or having my joint pains. He's protective over me unless he's the one bothering me. He's lucky I have my heart problems because he gets to go to Camp LUCK. I tried to make him do my chores last summer to pay me back but my Mom said that's not how it works.

Camp LUCK q's

What do you enjoy most about Camp LUCK? I like meeting new people with hearts like mine and trying new things.

What was your favorite activity at KidsCamp? Dodge ball. It was so much fun. I used people as human shields and won! The first year I got hit in the head, that hurt, that wasn't very fun. I did not like dodge ball that year. 

Has Camp LUCK made any positive impact on you?  If so, how? I had never met another kid with a heart problem before and it's awesome I know so many now. I also didn't  like the outdoors as much but now I do, so that's good too. I love Camp LUCK, it's so much fun. 

What are some of your hobbies or favorite things to do? I play drums, I love going to the movies, swimming, riding my bike with my brother and chillaxin with my family.

What is your favorite food to eat? Nachos!!

Who is your favorite musical artist? I like anyone who can play the drums really good. I listen to minecraft songs and kids rock on pandora.

If you could give advice to someone, what would that advice be? To always be yourself !!! Be your own normal!   

What is the best advice you have ever received from someone? To not care what other people think of me! My Parents always tell me that there MIGHT be people that don't like me or don't think I'm cool or want to be my friend but there will ALWAYS be people who love me, know I'm awesome & will always be my friend so I should focus on those people in my life. That helps me sometimes.

Any other information you wish to share? Camp LUCK rocks!! I can't wait to go this year!!

Gavin Cornell

Trivia Answers in Ed. 2

1. What year did Camp LUCK have its very first Camp? 2010

2. What is the age of the youngest child to ever attend Family Camp?

3 months old3. Who made up the Camp game Rambo? Dr. Rene’

Herlong and several others.4. What kind of animal is the Dododillywhopper? A

rarely seen one eyed turquoise colored bird5. What are 2 new programs that Camp LUCK Cares is

starting this year? Baby LUCK and Beads of Courage6. How many kids with transplants attended Kids Camp

this past year? 87. In January 2013, LCK (Levine Cardiac Kids) merged

with Camp LUCK. Who was the first president of LCK? Lisa McKenzie

8. What are the 2 Big Fundraisers for Camp LUCK? Bike LUCK & Open Your Heart Auction9. What is LUCK (in Camp LUCK) an acronym for? Lucky Unlimited Cardiac Kids

2014 Family Camp was EPIC!!

Family Camp, which was held May 16-18, 2014, was an AWESOME weekend! We had 29 families totaling 130 participants along with 69 spectacular volunteers! The two days were filled with “unzipping”, camp songs, delicious food, hilarious skits, fun programs and of course tons of laughter. The opportunity for our families to spend quality time together in a super positive environment is our goal. Programs included horseback riding, archery, canoeing, kayaking, paddleboarding, art & crafts, climbing, athletics, nature hikes, Glow Dance and Farmer’s Fest Olympics!

Check out Http://theaureolaspectrum.zenfolio.com for Ryan’s pictures from the weekend! Click on CLIENTS in the menu and then type in campluck2014... and enjoy!!

KAPOW!!

The time at Camp LUCK Family Camp has taught us that we are a part of something. It has also brought us closer together as a family. We have learned that we can rise above our hardships

and come out stronger for the experience. Nothing can bring us down. We are Camp LUCK! -Nivens Family

Family Focus:Richard and Julie Salemme moved to the Charlotte area from Florida in 2007. They were originally from Connecticut and Massachusetts, and if you talk to them, you'll probably be able to tell which of them is from where. Rich and Julie have two daughters, Gabriella (who likes to be called Gabby), their heart kiddo, is ten-years-old, and Sophia, is seven-years-old. The Salemme's added to their family in December, when they adopted a lab boxer mix puppy they named Roscoe.

The Salemme's learned of Gabby's heart condition while Julie was pregnant. Her eventual diagnosis was Noonan's Syndrome, but it took a few years and genetics testing before they received the correct diagnosis. Gabby has been hospitalized twice, once at birth, and the other time when she was four and a half years old. Julie explains, “She underwent a bilateral myectomy of the lower two chambers in order to allow for more blood flow. [Gabby’s surgeon,]Dr. Baird informed us that there was a chance when cutting the septum they would affect the SA (sinoatrial node) or AV (atrioventricular) nodes.”

The Salemmes

CHD Fact:Did you know?Due to advances in care for children with CHD, there are now more adults than children with CHD.

In addition, Gabby's hearing was tested when she was three, and she was found to be “moderate” to “severely” deaf in both ears. Julie explains, “Gabby wears bilateral hearing aids and has always referred to them as her 'hear betters' because that is what they've always done for her.” As far as Gabby's prognosis, “She has biannual check-ups to see how the heart is developing. The doctor is monitoring and watching the heart to see how it grows. Will she need a transplant down the road? No one knows, but it is a possibility,” Julie said.

The Salemme's have been part of Camp LUCK since 2010 and have attended every Family Camp. Rich says, “The girls love Camp LUCK and get excited when ever they hear anything involved in Camp LUCK.” The sisters are both excited to be attending Kids Camp this August as well.

When asked what Camp LUCK means to the Salemme family, Rich said,”Since Gabby was little we have tried to let her be a normal kid and not define who she is or what she does by her condition.  As long as her doctor says it's okay, we let her do it and help her to get past her fears. In the beginning, we always worried about the future, and eventually realized we were going to worry her life away and not let her be a kid.”  Julie adds, “We live each day and try to make the most of it, as we cannot change the past nor how long she will be with us.” She continues, “When I heard of Camp LUCK, it reminded me of my days at YMCA camp, and I wanted that for my children, but was not sure what my husband would think. After we were at Family Camp for one day the first year, there was no doubt we would be coming back every year. That first year Gabby was seven and Sophia was only four...we LOVED Camp LUCK and have come back each year.”

It's clear that Camp LUCK has touched the lives of the Salemme family in a positive way when Rich says, “The people that run Camp LUCK are inspiring and friendly. Like Bird (Jay Thompson) says, 'unzip' yourself. Camp LUCK has taught us as a family to leave the worries of life behind and just enjoy ourselves and nature.”

This spring and summer, Rich, Julie, Gabby, Sophia and Roscoe are looking forward to all the fun in the sun they can get, Girl Scout camp, visiting family, and participating in Bike LUCK and both Family Camp and Kids Camp. Sorry Roscoe, no dogs aloud at camp...yet! We are so lucky the Salemme family has chosen to be part of Camp LUCK, and look forward to seeing them at all the upcoming events!

Julie continues, “That chance became a reality because her AV node does not function as it should, and she is dependant on a pacemaker.”

With your help, the Camp LUCK Cares division has delivered bags and bags of clothing donations, and other baby-related items, to the littlest heart babies at Sanger! Thank you to all who have donated recently and in the past!

The caring folks at Sanger, headed up by Saiyi Diaz, are still in immediate need of baby boy clothing. Keep in mind, books, toys, baby gear, and even clothing for older kids, moms and dads are also appreciated. This is an ongoing effort, so we thank the Camp LUCK family for your continued support!

Donations can be dropped off in person at Sanger, brought to any Camp LUCK event, or you may contact Melissa Mulligan at mulligan.melissa@gmail.com to arrange for pick up.

Heart mom Melissa Mulligan has agreed to share her Queen of Hearts recipes for Maple Pecan Pie Granola.

12 cups oats2 cups chopped pecans (can substitute other varieties of nuts)1 cup coconut oil (can substitute other types of oil, such as olive or canola)3/4 cup brown sugar1/2 cup honey1/2 cup maple syrup1 TBSP vanilla1 TBSP salt

1. Preheat oven to 325 degrees.2. Cover two large baking sheets with parchment paper.3. In a large bowl, combine oats and pecans.4. In a saucepan, combine oil, brown sugar, honey, maple syrup, vanilla and salt. 5. Simmer over low heat until all ingredients are incorporated.6. Pour oil mixture over oat mixture and stir until combined.7. Spread onto baking sheets and bake for 15 minutes.8. Stir granola and bake for 10 minutes, and repeat every 10 minutes until golden brown.9. Cool granola completely and store in an airtight container.

To experiment with other varieties, simply substitute the maple syrup with any flavor jam, preserves, or applesauce. You can also add dried fruit or chocolate chips after the granola has cooled. Enjoy!

Doin’ Good...YUM!...Famous Granola

Camp LUCK Closet:

Camp LUCK Cares is our family support services department. The following are some of the new and/or improved programs we are implementing:

Camp LUCK Cares

Baby LUCK

H2H Visitor Training

Beads of CourageBeads of Courage is a national program that inserts positive reinforcements within hospital visits, surgeries and even camps. We are close to launching this on the 6th and 8th floors of Levine’s Children Hospital.

We hosted our first Visitor Training program for those interested in the Heart to Heart Matches on June 8th. H2H Visitor Training allows individuals to be properly trained to go into the hospital to support families recently diagnosed.

Baby LUCK is hosting its FIRST EVER kickoff meeting Saturday, August 2nd. What is Baby LUCK? Baby LUCK is an outreach program of Camp LUCK Cares that supports and services families of the youngest members of our heart community. For more information, contact Casey Clark at caseyclark03@gmail.com.

Events and Such...

For more information about Camp LUCK or to become more involved by volunteering or donating, please contact CampLUCK@gmail.com or check us out online:

CampLUCK.com orFacebook.com/CampLUCK

Camp LUCK is a 501(c)3 not-for profit organization.

Kids Camp August 10-15th, 2014

Camp LUCK Kids Camp is a MAGICAL week for eligible heart kids and one sibling, ages 7-14. Six days filled with super fun activities like rock climbing, athletics, arts & crafts, dancing, singing, canoeing, paddle boarding and much more. We have over 110 kids registered with a few spots left. Brochures and Registration Forms are available online at CampLUCK.com and at Sanger Clinic.

Check out our 2 minute promotion video at www.vimeo.com/74684706

Camp LUCK transforms our heart kids into Lucky Unlimited Cardiac Kids by programs designed to nurture, educate and support the kids and their families. It's more than a camp; it's an attitude...and changing attitudes changes lives.

Camp LUCK Board of Directors

Jay (Bird) Thompson, President

Dr. Rene’ Herlong, Vice President

Chris McKenzie, Treasurer

Bryon Mulligan, Secretary

Kim Jackson, Information Director

Kim Ransom, Fundraising Chair

Carol Douglas, Volunteer Coordinator

Shannon Bone, Marketing and Support

Julia Engel, Bike LUCK Coordinator

Anmarie Wyrick, Camp LUCK Cares