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Chapter Spotlight: Northern New Jersey
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Q & A with the President of the Northern New Jersey Chapter, Kim Shadek:
| 1. How did your IMH chapter get started? After our son Daniel was born with HLHS, we decided to hold a fundraiser to raise money for CHD research, and after the 3rd fundraiser, we decided we needed to start a foundation or a non-profit. As we started the process to begin our foundation, a message was posted to a support group asking if anyone was interested in starting a chapter of It's My Heart. After speaking with Corrie we decided to go ahead and start the Northern NJ Chapter.
2. What do you see as the greatest needs IMH can meet in your area? Here in Northern NJ, our greatest needs for our families is information and support. By information, I mean our guest speakers at our monthly meetings. We have a great turn out every time we have a speaker. And for support, it is always good to have someone to talk to or bounce things off of about your situation.
3. What events have you had or planned for the future? On October 3rd we will be hosting our 3rd annual CHD Awareness Walk. Last years walk had 600 people in attendance and we rose over $60,000. Every February we host a Beefsteak dinner; our next one is set for February 24th. This December we will be trying something new by hosting a Breakfast With Santa! We also hold family fun events throughout the year such as trips to the zoo, amusement parks, and children's fun centers.
4. What successes have you had as a chapter? Our chapter has had great success with volunteers. We have a great group of about 20 people who either hold officer positions or volunteer at every event. The same group that started this chapter 3 years ago still stands, and we have added some amazing people to this mix as time has gone by.
5. What goals for the future does your chapter have? Our goals for our upcoming fiscal year include: - Reaching families that receive their cardiac diagnosis in-utero. - Raising more money for CHD research - Reaching more families in Northern New Jersey that we have not yet reached - Obtaining additional corporate sponsors for our events
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September 26, 2010 NBC New York's Weekend Anchor Pat Battle recently interviewed Programs Manager Cathy Biamonte, her son Michael, and the Northern New Jersey Chapter President Kim Shadek. They talked about It's My Heart and the importance of raising money for CHD research.Click here to see the story.
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| Heart Journey | |
This is the Heart Journey of Trisha, as told by her mother, Tracy Pokress

Trisha is my 15 year old daughter. Since she was 4 years old, her dad and I knew something was wrong. In sports, she would just stop in the middle of a game and not know where she was or what she was doing. Doctors said it was from the heat. As she got older, strange things happened randomly and each time, we took her to the doctor, only to hear another excuse. A few months before school let out this past school year, she passed out in the street while running after school. Again we took her to her doctor, and again, nothing. A few days later she passed out in the shower. We took her to the doctor once again. Her symptoms were lightheadedness, loosing eye sight, trouble breathing and being disoriented. Because she had had all kinds of tests throughout the years, the doctors finally sent her to a cardiologist. All tests there were negative as well. By this time, her Dad and I were at a loss. On my side of the family, we had some heart problems, and when I mentioned this, her cardiologist ordered an MRI with contrast. Our phone was ringing the minute we got home. She had an Anomalous Coronary Artery. It went between the aorta and the pulmonary arteries and that artery would be "pinched" off with any exertion. We were told that we were very lucky and that she could have died at any of the "spells" she had had in the past. She had open heart surgery on May 5th of this year, and is doing great! She will even be playing High School Basketball! As you can see in the picture, (she is the one in the middle) her scar looks great and she has resumed her normal life. Thanks to Texas Children's Hospital in Houston. We are very blessed!
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CHD in the Media
| The Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) Decides to Recommend a Heart Screening for Newborns.
On September 17, 2010, the SACHDNC agreed to recommend the addition of screening for Critical Cyanotic Congenital Heart Disease to the core panel for univeral screening of all newborns in the U.S. This would mean newborns would be given a pulse oximetry screening after birth.
Congresswoman McCollum from Minnesota had this to say after the vote: "We have the ability to reduce the infant mortality rate in this country. We have the technology, the know-how, and the expertise to fight the statistics. Through groups, such as the Newborn Coalition, we can effectively tackle this problem that unnecessarily plagues far too many newborn babies and their families."
The Newborn Coalition (www.newborncoalition.org) was a prominent force behind the recent vote and representative Annamarie Saariren, coaltion board member and mother of a toddler diagnosed with a CHD at 40 hours old praised the recent decision:
"This is a huge win for the critical congenital heart disease community and the Newborn Coalition. The Advisory Committee has taken a historic step forward - laying the groundwork for an important point of care screenings that can improve outcomes and save lives. We thank the Committee for their positive decision on behalf of all the babies lost to heart defects, those surviving with pediatric heart disease, and for all future newborns who now have an improved chance of survival."
Kathleen Sebelius, Secretary of Health and Human Services now will have 180 days to either pass or reject this measure. The SACHDNC will send her a letter which outlines their reasons behind the decision.
If it is adopted, it is then up to individual states to decide if they will adopt this measure and how they will apply it to their state. Each state could make it universally required or universally offered but not required at birth; additionally, each state would need to adopt a timeline for the system to be put into place.
As families and friends affected by CHD, you can contact your state representatives and give your support to the measure.
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CHD in the News
| CHD constantly remains in the news as new studies are conducted, families share their stories, and awareness is raised. Here are some prominent stories from this month:
- Dr. Albert Starr Interview: Fifty-years ago on September 21st, a TURNING POINT IN HEART SURGERY took place IN PORTLAND. A team led by Doctor ALBERT STARR did the world's first successful VALVE REPLACEMENT at what is now O-H-S-U. Before that...no patient had lived longer than three-months after such a surgery. Starr...along with engineer LOWELL EDWARDS...created the world's first MECHANICAL HEART VALVE. At least four of the people who received one lived for more than forty-years. Listen to Lars Larson's interview with Dr. Albert Starr that aired on KXL News Radio on September 21, 2010 by clicking here.
- GPU Enables Beating Heart Surgery: Jen-Hsun Huang presented a breakthrough development in robotic cardiac surgery called "beating heart surgery". This notable development of minimally invasive surgery [MIS] benefits patients through shortening convalescence, reducing trauma and surgery costs. The aim is to make the surgery more intuitive for the surgeon and safer for the patient.
- Overprotective Parents May Impact Heart Anxiety in Adults With Congenital Heart Conditions: Approximately one percent of all infants are born with congenital heart defects and over 90 percent of these children survive into adulthood, thanks to recent medical advances. As well as their medical condition, these patients face mental health issues including anxiety, neurocognitive deficits, body image concerns and difficulties with relationships. Research suggests that levels of parental protection are likely to be higher in children with congenital heart disease compared with healthy children.
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Upcoming Events
| Many IMH chapters have exciting fundraisers planned for this fall to raise funds and awareness for CHD. If you are in the area, please support your local chapter!
IMH Greater Seattle: 1st Annual Greater Seattle CHD Awareness Walk on October 2nd
IMH Northern New Jersey: Northern New Jersey Chapter CHD Awareness Walk on October 3rd
IMH Metro Detroit: Metro Detroit Big House Big Heart Event on October 3rd
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Nurse Recognition Award
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"Day after day thousands of heart failure nurses attend to the needs of
the millions of Americans with heart failure largely without
recognition," said Dr. Tony Joseph, President of the Colloquium. "This
award recognizes the competency and skills of heart failure nurses by
affirming their important role on the lives of those with heart
failure."
Do you know a nurse that has made a significant impact
on your life? Nominate them for the Heart Failure Nurse Recognition
Award and honor their commitment to providing excellent heart care.
NOMINATE A NURSE today by clicking here!
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| Family Matching |
When you or a loved one is faced with the diagnosis of a CHD, it is important to know that you are not alone. Through our extensive Family Matching database you are able to connect with other families who have gone through or are going through similar situations. You will be matched based upon diagnosis and/or proximity. Sharing your experiences is an important way to connect and learn from others' experiences. If you would like to take part in this program please go online at www.itsmyheart.org and fill out our Family Matching form.
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Someone Loves IMH!
| From Alice on Facebook:
"This is a wonderful site! I wish there was something like this when my son was born and diagnosed with Pulmonary Atresia. Does anyone know of a chapter in New York? I noticed that the closest is north New Jersey. Maybe I can start one....." |
Donations
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Recurring monthly donations from: *Beth Jacobson One Time Donations from: Laura Ante in memory of Kathryn Lucille Lowther from Nestle Waters STX Nestle Waters NA in memory of Kathryn Lucille Lowther from Nestle Waters NTX Gary Goldman in support of Jordi Sunberg Justin and Diana Torguson in memory of Hazel Heidelberger Julian Garcia in support of Tara Garcia
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.
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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, CaliforniaSouth Florida Northern New Jersey Cleveland, Ohio Columbus, Ohio Portland, Oregon
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