Thursday, February 14, 2013

Children's Heart Foundation, Advocacy & Free Give Away!

Greetings on this fine Valentine's Day AND Congenital Heart Defects Awareness Day!

Children's Heart Foundation

Yesterday was particularly exciting for me since I had the opportunity to meet the founders of the Children's Heart Foundation Texas Chapter.  I had already met Sarah Berg, the President, but I hadn't met all of the other officers. They are an awesome group of women and all of them are heart moms like me. We all immediately hit it off and seemed to create an instant mutual admiration society.

The Children's Heart Foundation Texas Chapter held its Debut Event last night. The night completely satisfied the senses.  There was live music (two lovely women who played harp and various flutes -- very interesting!), the food smelled heavenly, people were dressed beautifully, there were wines to taste and hugs were given away freely all night long.

I discovered quite a bit about the Children's Heart Foundation in preparing for my speech. I like how it came to be because of the birth of a very special little boy -- Sam Peterson. He is the son of Betsy and Steve Peterson and his premature death, due to his complex heart defects, caused them to start the Children's Heart Foundation. This is the only foundation in the United States created to fund congenital heart defect research. There are now 13 chapters of the Children's Heart Foundation scattered across the United States, but I imagine it won't be long before there are many more chapters than that.

It was a joy for me to speak at the Texas Debut Event. There was a lot of positive energy in the room and people really understood my message. Tears were shared, as were many hugs. People enjoyed seeing photos of my Alexander -- an 18 year old survivor of hypoplastic left heart syndrome (HLHS) and Katie Cataldo -- an 18 year old survivor of hypoplastic right heart syndrome (HRHS). It's a pity Alex couldn't be at the event, but he did the best thing he could to be part of it -- he sent me a photo I was permitted to share with the group. It was a photo of him after his Fontan revision where he was proudly displaying the very green tongue he had after eating nothing but green Jell-O after his open-heart surgery. He was starving and couldn't get enough of the Jell-O since he was only permitted to have clear fluids. I appreciated having that fun photo to share during what could have been a very somber speech. Alex, as usual, found a way to bring joy to the situation, even though he wasn't with us physically (he was at NYU-Poly where he's studying electrical engineering).

Advocacy

This event was an excellent way for me to continue my desire to be an advocate for the CHD community but I believe that I will have even greater ways to do that in the future. Just last week I formally joined the Adult Congenital Heart Association. The ACHA was founded years ago by a very dear friend, Karen Klein McNulty. Because of that, I have always felt an affinity to the ACHA, but I didn't formally join it until just last week.

Now that both of my sons are effectively out on their own, I have more time to attend to my passions. For many years I have acted as an advocate for the CHD community through my writing and speaking but now I believe I need to take a bolder step. I'm ready to fight for the rights of children and adults with CHDs. The ACHA has a special program in March where they will actually teach us how to lobby for the rights of those in the CHD community. We will be in Washington, D.C. and we will have a chance to talk to our lawmakers.

Here is where the interconnectedness of the universe is ever apparent to me. I signed up for this event last week. My son and new Vice President of Baby Hearts Press, Joseph Jaworski, will accompany me to this event to learn right beside me how he can also be an advocate. Last night I spoke to a group of people at the Children's Heart Foundation Texas Chapter Debut Event and one of the speakers who followed me was Heidi Cruz, wife of Ted Cruz, a Senator from Texas. Thanks to this event, I was able to hear Ms. Cruz speak about her and her husband's passions and their desire to help the same foundation I wish to be a part of! In addition to that, there was time for me to speak personally to Ms. Cruz and some of the men who work with her husband. We are now in the process of making plans for me to visit with my Senator either in Texas or in Washington, D.C. while I am there for the ACHA Lobby Day event! You can go here to register to attend yourself:  http://congenitalheartadvocacyday.eventbrite.com/#

Free Give Away!

In honor of Congenital Heart Defect Awareness Day and in an effort to continue to educate the CHD community about congenital heart defects, Baby Hearts Press is offering a free Give Away!  If Baby Hearts Press can get 1000 Likes on Facebook by midnight, February 14, 2013, BHP will give away a free lapel pin, a free poster and a free book.  To register for the free give away all anyone has to do is 1)  Go to this page:  https://www.facebook.com/BabyHeartsPress?ref=ts&fref=ts

2)  Like the page

3)  Put a note on the page listing your or your child's heart defect

4)  Jot a note about how you found out about Baby Hearts Press

5)  If you are a supporter of the CHD community and don't have a heart defect, that's great! Just tell us a fun fact about yourself.

After posting a note on Facebook that we were doing this, amazing author Amanda Rose Adams offered to give away a free book herself!  Amanda Rose Adams is the author of Heart Warriors:  A Family Faces Congenital Heart Disease. You can read more about this wonderful book at Amazon.com:  http://www.amazon.com/Heart-Warriors-Family-Congenital-Disease/dp/1933016809/ref=sr_1_1?ie=UTF8&qid=1360893081&sr=8-1&keywords=amanda+rose+adams

Amanda, like Anna Jaworski, is a heart mom with a story. All heart moms have stories -- as evidenced by The Heart of a Mother!  What is heartwarming is how women from around the world have been able to tell their stories to others, to share their experiences and to help families around the world to heal from reading those stories and to feel part of a community, instead of feeling completely vulnerable and alone in a very scary world.  We would like to thank Amanda for her generosity and compassion in sharing her book with friends of Baby Hearts Press.

Please help Baby Hearts Press get to 1000 Likes by midnight! With help from people all around the world Liking us, we will be able to spread awareness and educate others about congenital heart defects. Isn't that what Congenital Heart Defect Awareness Day is all about?

3 comments:

hrudaya said...

nice to see the best heart foundation for helping poor people. You can watch one more here. Hrudaya Foundation

Anna Jaworski said...

Thank you for sharing. Maybe by working together, we can help save more lives.

Danish Smith said...

Great Social work.. we need to increase there level..!!




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