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ACHA Update

The official e-newsletter of the

Adult Congenital Heart Association


October 2010


Leadership Update

As laid-back summer has been replaced with back-to-work fall, all sorts of exciting events have occurred here at ACHA central. This September’s Strategic Retreat brought together ACHA’s new Board Members, Medical Advisory Board Members, and staff to discuss next steps as we enter the final year of our current strategic plan. Key activities in 2011 will include executing our National Conference April 29th – May 1st in Los Angeles, continuing the Congenital Heart Walk initiative, and expanding our webinar, publication, and peer education and support offerings. Thanks to the REACH grant, we will also start building the multi-center research infrastructure necessary to find new treatments for the many serious health problems facing adults with CHD. As we move towards our next Strategic Plan, we will be surveying our members about key issues that ACHA should tackle next. Already have an opinion? Send it to me at


This fall three new staff members have joined the ACHA team: Terri Schaefer, Jessica Phelan and Paula Miller. Terri Schaefer is our first-ever Communications Manager, and is hard at work on our website upgrade, our social media presence, and strengthening all our outreach efforts. Are you a patient or family member with a CHD-related blog and/or Facebook page? Let Terri know—you can email her at Jessica Phelan steps in as our new Development Manager, and will be assisting the many volunteers whose efforts raise the funds and awareness we need to get things done. Interested in getting involved? Email Jessica at Paula Miller, our new Member Services Manager, served as an ACHA Board Member and Board Vice Chair from 2002-2008, and has been serving as a consultant to ACHA’s Heart to Heart Ambassador Program. Paula will be taking on oversight and coordination of all our patient education and support services. Got a question about the 2011 Conference, a topic you think is perfect for the next webinar, or an interest in serving as a peer educator? Email Paula at and let her know.


As we welcomed these three excellent additions, we were very sad to see ACHA Research Manager Rachel Linstead-Goldsmith leave to pursue her graduate school dreams. Rachel’s outstanding efforts have been central to all ACHA’s research efforts, and she leaves us with big shoes to fill. Do you or someone you know have the skills and passion to effectively oversee ACHA’s growing research portfolio? Go here to see the job description and application instructions for this position, as well as for our open position as ACHA Health IT Project Manager. Please note that remote employment is an option for otherwise-perfect candidates.


In closing, I have to mention one more delightful fall addition to the ACHA team: the spunky little squirrel that has taken up residence in my office window! Some offices have ant farms or aquariums—thanks to a missing pane in my storm window, ACHA now has a perfect cut-away view of a squirrel’s winter hideaway, complete with Mr. (or Ms.) Squirrel. So when I am feeling squirrelly, or going a bit nuts, I just take a look at my fluffy-tailed friend, and get back on the acorn trail. 


Happy Fall!


Amy Verstappen

ACHA President/CEO


Advocacy Update

Twashingtonhank You!

A huge thank you to our many advocates and their willingness to go the extra mile and participate in Summer In-District Lobby Visits. We were able to engage over 50 advocates interested in contacting or visiting their congressperson this summer. Our efforts were focused primarily on those members who are serving on the appropriations committee, who would have the greatest influence in ensuring that the Congenital Heart Futures Act receives the funding it deserves. Our efforts are working: despite the tight fiscal climate, the Senate has included $2 million dollars to help fund the Futures Act. We must continue to make our voices heard: You have a story to tell—get involved today! To join other advocates in action, email


Advocacy Action Alert—Vote!

A simple advocacy activity can make a world of difference. For more information about making your vote count, click here.

—Amy Basken

Research Update

New Research Study Listing


Are you an adult with CHD interested in participating in research studies? ACHA provides an online listing of studies reviewed by its Research Committee. A new listing has been added for a study on heart failure in ACHD at Oregon Health and Science University – click here to learn more.


We encourage researchers interested in listing studies or clinical trials on ACHA’s website to submit notices for review. Click here for submission instructions.

Parent Knowledge Study Wrap-up


The Parent Knowledge study has completed enrollment at nine participating pediatric centers. Five hundred parents and guardians were surveyed on their knowledge of care guidelines regarding their children’s future health care needs. Results have been submitted to a medical journal. ACHA congratulates the incredible volunteer research team behind this effort on their achievement. Learn more about the study here.

New Research Committee Co-Chairs


Last month Stephen Cook, MD, and Steve Crumb, MSN, CNP accepted nominations to become ACHA’s new Research Committee co-chairs. Both have served on the Committee for years and both are on the Adolescent and Adult Congenital Heart Disease Program team at Nationwide Children’s Hospital in Columbus, Ohio. ACHA thanks Dr. Cook and Mr. Crumb for taking on these new roles. We also thank Dr. Michelle Gurvitz, who stepped down from her Chair role after several years leading the Committee, for her committed service. Dr. Gurvitz will continue to serve on the Committee.

—Rachel Linstead Goldsmith

Members Making a Difference 

ACHA is very pleased to announce the formation of our Heart to Heart Ambassador Program. It is through this very special program that we provide nationwide, supervised peer support and personalized information to adult CHD patients and their family members. ACHA’s peer volunteers, or “Heart to Heart Ambassadors,” are CHD patients who are trained and equipped with the information required to assist members seeking short-term emotional support or who are looking for information to assist them in coping with their illness.


Heart to HeartIf you or anyone else you know could benefit from being matched with an Ambassador, we’d love to hear from you. After contacting us, an application will be mailed out and once it is returned, our Program Coordinator will do everything possible to make an appropriate match. We will attempt to locate an Ambassador having a similar diagnosis or surgical/medical history or will simply be someone who has had to adjust to a comparable change in lifestyle and/or physical restrictions. The Heart to Heart Ambassador Program offers members the opportunity to connect with others who can relate firsthand to what it is like to deal with the stressors of having congenital heart disease. For more information on being matched with an Ambassador, please email

—Tracy Livecchi

Walks Update

Washington DC walkAs we announced earlier, this year we launched our new, national initiative, the Congenital Heart Walk. This exciting national campaign is designed to provide hope for the millions of families who face the challenges of our disease. The Congenital Heart Walk is also way to show the nation how a team of inspired individuals can make a difference.


For a Facebook photo album from the Greater Washington DC Walk on Sept. 12, which includes the picture above, click here.


To date, almost 1,500 people and over 200 teams have registered for our inaugural event and with five sites still to happen, our numbers continue to grow. That’s right, there is still time to register and walk this fall, either at our Central Ohio, Delaware Valley, Greater Cincinnati or Phoenix Metro site or in your own community through our exclusive Virtual Walk. To register, simply goto to register and get started today.


Don’t see a walk in your area? Interested in bringing the Congenital Walk to your community during 2011? Please contact Anthony Buffone at to find out how.

—Anthony Buffone

Giving Makes the Heart Grow Fonder! 

Donate NowACHA is beginning its Fall fundraising campaign! If you or someone you know has been helped by ACHA’s many services, please consider making a donation. Whether it’s $5 or $5,000, every tax-deductible contribution is spent efficiently and effectively to improve and extend the lives of adults with congenital heart defects. Simply visit our website to make an online donation or send your check, payable to ACHA, to 6757 Greene Street, Suite 335, Philadelphia, PA 19119.


Your donation impacts ACHA’s ability to reach out to heart defect survivors lost to care, provide improved member/patient customer service, develop new educational materials, and work with researchers.

—Jessica Phelan

Join Now


Donate Now

Connect with us online!






Ironheart Racing Founder to Compete in His 2nd Ironman 




CHD survivor and ACHA board member Dave Watkins formed Ironheart Racing  with a mission to complete an Ironman (2.4 mile swim, 112 mile bike and 26.2 mile run) after undergoing open heart surgery to replace his aortic valve in 2005. He completed Ironman Coeur d'Alene and is now registered for Ironman Florida on Nov. 6. Dave, who is raising funds for ACHA during this endeavor,  was also just chosen to represent the Janus Charity Challenge at the official Ironman Press Conference!


For more on Dave's story, click here.

Are you interested in working at ACHA?


We are currently hiring for two positions, Research Manager and Health IT Project Manager. If you are interested, click here for the job descriptions.

Save the Date: ACHA 6th National Conference


Los Angeles


Join us! Our sixth national conference will take place at the Los Angeles Airport Marriott on April 29-May 1, 2011. Click here for all the details.

26.2 Miles for ACHA




ACHA Medical Advisory Board Member Arwa Saidi is running the Dublin Marathon on October 25th to raise funds for ACHA! To donate to her 26.2 mile run, please click here. And here's a message from Arwa: "As you consider your donation, please remember... that you are contributing to a very worthwhile cause...and also that I start my long runs at 4:30 am during the Florida summer (often in the city of Gainesville, which is nicknamed The Swamp!)"

To My Son on His 25th Birthday:


ACHA member Martha M. Pauly wrote a letter to her son on his most recent birthday and shared it with us.


To my son Andrew on his 25th birthday,


There is no Hallmark card for this, but through 25 years and 7 open heart surgeries you have:


• Proved that three-quarters of your heart is stronger than most folks’ entire heart


• Made me learn the anatomy and physiology of the heart (wish I’d paid attention in high school biology!)


• Never, ever made it on the growth chart at the pediatrician’s office (and now you’re 6'1"!)...


Click here or on the photo below for the rest of the letter.


(In the photo, from left, is Andrew Paukstitus, Martha Pauly and Quinn Bradley [honorary walk chair], at the Congenital Heart Walk - Greater Washington DC on Sept. 12, 2010)

To My Son


 Tel: (215) 849-1260

Toll Free: (800) 921-ACHA
Fax: (215) 849-1261

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