July 2010

Vol 5, Issue 7


               Artey Trademark

It's My Heart Newsletter

Monthly Spotlight: 2010 National IMH Conference
Monthly Spotlight
It's My Heart held its 2nd National CHD Conference earlier this month. The conference was a huge success and was a touching time for many as they were able to hear other heart stories and make new connections within the CHD community. The morning keynote speaker, Dr. Charles Fraser Jr. M.D., Chief of Cardiac Surgery and newly appointed  Surgeon in Chief at Texas Children's Hospital, shared history of surgical options for those with a single valve and provided insight into new technology for the future. Award winning pianist Paul Cardall told his heart story and shared his musical talent with those in attendance. Dr. Wayne Franklin M.D. was able to give perspective on transitioning from pediatric care as patients with CHD get older. Adults and teens alike participated in breakout sessions with practical information about CHD. Saturday's conference ended with a panel discussion with three adults living with CHD. They were able to share their perspective and answer questions for parents. The kids in attendance enjoyed their time with the child life specialists as well.

Thanks to all those who worked to make this event a success, and thanks to all who attended for sharing your weekend with IMH!
  
               teens at conference
                           Teens in attendance with other adults with CHD
                                                      
New Address
Moving BoxOur office has moved!
The It's My Heart, Inc National Office has moved to:

1775 St. James Place, Suite 130
Houston, TX 77056

Please update your address book and make sure any reoccurring employer match donations are updated as well.
 
IMH in the News

Pamela Camit, the president of the Fresno IMH chapter, was recently featured in the Fresno show "0 to 5 in 30 Minutes" as they spotlighted her son Ben's CHD and It's My Heart.

Here is an excerpt from the story:

Strong Families - Mending Hearts

Finding out your child has a heart defect can be difficult.  In many cases, it comes as a shock to parents.  It's a good idea to find support as you try to make sure your child receives proper care.  It can be empowering for parents and caregivers.

Little Ben Camit is doing very well these days.  But when he was born in 2008, his mom Pamela says he had a heart defect.  "Atrial Ventricular Septal Defect.  It's holes between the upper and lower chambers of the heart and a valve that wasn't all the way formed."

Pamela says she immediately tried to find out more about her child's condition, but there wasn't much out there.  Then, she came across "It's My Heart."  Corrie Stassen is the Founder and Executive Director of the national organization.  She says, "The overall mission is to spread awareness of congenital heart disease.  And to educate the community, provide support and advocate for those affected by congenital heart defects."

Corrie founded "It's My Heart" after one of her children was born with a heart defect.  "And it was found that he had a CHD at four days old.  He had his first open heart surgery at 1 week old.  Then, he had to go to heart transplant at 3 months old.  That was kind of our journey but during that time there wasn't much out there."

Corrie decided to find out more about the condition affecting her son, Noah.  "I did some digging and found out that it was America's number one birth defect and killing twice as many children as all childhood cancers combined.  It just did not make sense to me that there wasn't a whole lot out there."

And that was the motivation behind the launch of the "It's My Heart" organization, which Corrie says is now 10-thousand members strong.  One of those members is Pamela Camit.  Eager to advocate for those little ones, Pamela started a local chapter of "It's My Heart" in Fresno.  Pam says, " (I) didn't even hesitate, nor did I think about what I was getting myself into.  It was just like 'YES!'  I didn't even ask my husband.  Didn't even bring it by the family.  Just knew I wanted to do it.  I figured perhaps I wasn't the only one who didn't know what CHD was."
"It's My Heart" offers support groups, family events, and something they call family matching.  "If they came to us saying I have a child with the same birth defect as you.  You know you go down and talk to them, or just connect with them and make then felt that you know they are not in this alone."

As Corrie explains, by sharing information and personal experiences "It's My Heart" helps provide the tools so that parents can become strong advocates for their children.  "When you realize that this is a big problem and that you are not alone it empowers you to be able to go out and make a change and to learn to advocate for not just yourself but for each other.  And there is so much to be said of that because it's through advocacy that quality of life will be increased and hopefully length of life will be increased.  And though my son is not alive today it is still a very important mission of mine, personally."

Ben Camit

                              Ben Camit

To see the story in its entirety, clickhere.
Awareness for CHD
10 Ways to Raise Awareness for CHD     this summer:

1. Encourage your kids to have a lemonade stand and donate the proceeds to IMH.
2. Do a comfort bag drive at your Vacation Bible School or with your playgroup.
3. Hold a bake sale.
4. Hold a garage sale with friends and family and encourage them to donate the proceeds to IMH.
5. Update your blog with stories about CHD and give a link to the IMH web page.
6. Encourage your friends to join the IMH facebook page.
7. Hold a car wash.
8. Let your kids and their friends make cards for CHD patients at your local hospital.
9. Submit an article with your heart story to your local newspaper.
10. Attend the next meeting at your IMH chapter and get involved!
 
In This Issue:
IMH in the News
Heart Journey
CHD Birthdays
Someone Loves IMH!
Family Matching
Donations
It's My Heart Chapters

Quote of the Month

There shall be eternal summer in the
grateful heart.

Celia Thaxter

National Officers
& Official Volunteers


Corrie Stassen
Executive Director

Katy Wolff
Vice President

Lauren Simpson
Secretary

Alexis Durham
Treasurer

Anissa Speight
Medical Advisory Board Coordinator

Laurie Hutchings
Family Matching Director

Ann Martin
Literature Distribution

Ashley Auzenne
Project Development

Gail Brasser
Project Seamstress

Pamela Floyd
Conference Chair

Allison Johnston
Newsletter Co-Editor

Amy McCathran
Newsletter Co-Editor

Heather Vinson
Financial Director

Kate Shamszad
Child Life Specialist

Jill Vantine
Transition Coordinator

Cailey Fitzgerald
We Got Heart Chair

Tiffany Galligan
Marketing

Ty McCathran
Legislative Liaison

Robyn Steinberg
Web Administrator

Tim Hutchings
Web Admin Assistant &
Graphics

Kim Shadek
Chapter Liaison

Pamela Camit
Chapter Liaison

Visit our Yahoo! Groups

Follow Us on the Web

IMH Official Website

IMH Facebook

IMH Twitter
Support It's My Heart
Donate Button
Join Our Mailing List!
Heart Journey
This is the Heart Journey of Carl Wolford, and adult living with CHD.  
 This is a photo of myself, Dr. Cooley, and Mike Johnson, also a TAPVR patient.


   I was born with TAPVR September 7, 1957, and 4 months later, very near death, underwent open heart surgery. Dr Denton Cooley performed the surgery, which at the time was the 2nd successful case of its' kind. In the pioneering days of heart surgery, Dr Cooley evidently knew precisely what he was doing - it enabled me to live a perfectly normal life.  My life has been filled with sports and just about everything you can think of- all the activities expected of a little boy who grew into a Dad who had three children of his own. The point here?  After reparing the defect, children born today with TAPVR can indeed lead perfectly normal lives, but public awareness of CHDs must continue to be brought to the public's attention through organizations such as this. My hat is off to those instrumental in forming this very worthwhile group!

Share your story!
poetry contest
Language of the Heart
Poetry & Short Story Book


We want to hear from you! It's My Heart is putting together a collection of poetry and short stories written by or about people affected by heart defects.  We are looking for special moments, heartwarming and inspirational pieces. Poems and short stories should provide insight into the emotions, trials, and at times humorous events you have experienced living with CHD, either personally or through a family member. Please check out www.itsmyheart.org to submit and for more information, or contact book@itsmyheart.org.
Join us in putting feelings into words to share and inspire! Deadline for submissions is AUGUST 1ST!
CHD Birthdays

                 Elijah                        Emma Rose
                              Elijah Mayeux                                       Emma Rose Montgomery                   
                  October 14, 2008-July 3, 2009                                 July 9, 2006     


 
                                                         Railiegh                                    
                                                           Railiegh Brooke Flaniken
                                                                     July 17, 2008
                                                                                                              

TCH

Is your child born in August?  Please send us your child's birthday and picture so we can all celebrate your child's birth with you!

 

We also want to celebrate all your angel's birthdays too! So, please send us their information so we can include them as well! E-mail to

newsletter@itsmyheart.org.
Someone loves IMH!
A note about the 2010 National Conference:

"This conference was Awesome! Mom to Jacob (16)...Dr. Fraser is Amazing...the Details were perfect! Thank YOU!"

--Jamie, from the IMH facebook page

 
Do you know someone who loves IMH?  Send a story of how someone you know reached out to the CHD community! Email newsletter@itsmyheart.org.
IMH Southern Minnesota Walk for CHD
Minnesota walk image    Hazel's Lasting Imprint

    Alexandria's 1st Annual It's My Heart Walk for CHD
    to Benefit the IMH Southern Minnesota Chapter


    Saturday, September 11, 2010
    City Park, Alexandria, Minnesota


    If you would like to volunteer for this event, please contact:
          
    southernminnesota@itsmyheart.org

Featured Product
flybaby
fly BABY is the proud designer and manufacturer of The Healing Suit, a patented medical garment for hospitalized babies and children.

The Healing Suit is available in infant sizes ranging from up to 2.5 kilos (5 lbs 6 oz) to 11 kilos (24 lbs 4 oz), as well as a Toddler and Children's Pajama in sizes 2 on up. Our everyday clothing range includes fun and easy to care for, mix and match styles in sizes 000 up to size 3.

All fly BABY garments are designed and made in Australia, and feature our own line of Australian made printed textiles.

Visit the flyBaby website today at: www.flybaby.com.au
 
Family Matching
 
How do I cope with all of the procedures and hospital stays my child endures?

Are there any other children out there with the same diagnosis as my child? How are they doing following their surgery?

Who can I talk to that has had a similar experience?

If you have these questions and more, our Family Matching Program may be able to help you. We can "match" you with another family with the same CHD .We have more adults signing up for family matching each month .If you are an adult with congenital heart disease please consider signing up for Family Matching. You are a true inspiration for families. 
 
For more information, contact familymatching@itsmyheart.org.
Donations

Recurring monthly donations from:
*Beth Jacobson
 
One time donations from:

Erica Cox, Carson, Jordan, and Dylan in honor of Joshua Barish Weisman-
         Happy First Birthday!  We Love You! 
Michelle Mohsenin in honor of Frankie Furnari
Samara Hurley in honor of Joshua Weisman
Ursula Felmet in support of Joshua Weisman   
Rachel Walker in honor of Joshua Weisman
Megan Snyder to support the cause
Primrose School of Spring- Klein in honor of Hannah Theiss


Donations from the CHD Awareness Campaign Facebook page:

   Kim Harris
   Ambreen Khokar- to Modish Girl- Boutique's Birthday Wish
 
The following people donated to Sage McNamera's Birthday Wish:
            Sue Klein McNamera
            Dianne Klein Bell
            Ashley Wright
            Joe Hiber
 
The following people donated to David Romano's Birthday Wish:
            Debbie Hadfield Barnes
            Linda Fiorenzano
            Debbie Pulsone
            Lisa Santos Krupa
            Tina Campagnone
            Lori Lynch
            John Ryder
            Joyce Botelho Romano


Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way.  All donations are tax deductible.  Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc.

It's My Heart Chapters

The mission of It's My Heart provides strength and support for those affected by Heart Defects. It's My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It's My Heart creates alliances and networks among families, groups, hospitals, and the community. 

The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.

 
If you are interested in organizing a chapter or walk in your area, please contact the It's My Heart National Office at (713) 334.4244 or (888) HEART.07 or e-mail
chapters@itsmyheart.org.


Click here to find the IMH Chapter nearest you:


Fresno, California
South Florida 
Indiana (Michiana Chapter)
Boston, Massachusetts
Detroit, Michigan
Michigan (Michiana Chapter)
Southern Minnesota
Northern New Jersey
Cleveland, Ohio
Columbus, Ohio
Portland, Oregon
Metro Philly Fort Worth, Texas
Houston, Texas
Seattle, Washington


Click here for developing IMH Chapters