Share Your Story

Name & Contact Information

Are you the patient?

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If other, please specify.

First Name

Last Name

Preferred Name

Date of Birth

Gender

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Race/Ethnicity

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Mailing Address

Street Address

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City

State

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Email

Phone Number

Primary Hospital for Care

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How far away do you live from the hospital?

Would you like to learn more about the Adult Congenital Heart Association (ACHA) Peer Mentorship Program? The ACHA offers a peer support initiative that connects people living with congenital heart conditions to trained peer mentors for one-on-one support, encouragement, and shared experiences. Learn more here: Heart-to-Heart Peer Mentoring Program

YesNo

Wonderful! A Care Manager will make a formal referral for you so you can be connected to a peer mentor.

Tell Us Your Story

Storytelling is powerful and it is YOUR story to tell in as much detail as you want. Sharing your story helps others feel seen.

Upload your Photos

Please upload at least 3 different photos. We recommend high-resolution images as well as including different stages of your life (hospital, childhood, present day).

Photo 1

Photo 2

Photo 3

Do you permit Ollie Hinkle Heart Foundation to use the submitted image/s and story for marketing purposes (social media, website, printed materials, etc)?

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Would you like to be tagged in any social media posts?

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If your story is included in a printed card, do you want a copy of that card?

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Would you like them to be mailed to the address you previously provided?

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Please provide a different address for us to mail the card.

Consent & Privacy Agreement

By completing and submitting this form, I understand and agree to the following:

1. Collection of Information

Ollie Hinkle Heart Foundation (OHHF) is collecting the personal information I provide for the purpose of offering services, resources, and communications related to its mission.

2. Use of Information

My information may be used by OHHF staff to assess needs, connect me with programs, provide updates, and improve services.
De-identified and aggregated data may be used for reporting, evaluation, and advocacy purposes.

3. Sharing of Information

OHHF will not sell or share my personal information with third parties for marketing purposes.
OHHF may share my information with trusted partners or providers only when necessary to deliver requested services or as required by law.

4. Confidentiality & Security

OHHF will take reasonable steps to protect my information and maintain confidentiality.
Despite these safeguards, I understand that no system of transmitting or storing data can be guaranteed 100% secure.

5. Voluntary Consent

Providing my information is voluntary.
I may request to update or withdraw my information at any time by contacting OHHF at publicrelations@theohhf.org.

6. Consent Statement

By submitting this form, I confirm that I have read, understood, and voluntarily consent to the collection, use, and sharing of my information as described above.

Parent	Caregiver/Guardian
Grandparent	Sibling
Other

American Indian or Alaskan Native	Asian or Asian American
Black or African American	Hispanic or Latino/a/x
Middle Eastern or North African	Native Hawaiian or Other Pacific Islander
White or Caucasian	Prefer not to answer
Other

Prenatally	Infant (1 and under)
Preschooler (2-5)	School age (6-12)
Teen (13-17)	Young adult (18-39)
Adult (40+)

Infant (birth to 23 months)	Preschooler (2-5)
School age (6-12)	Teen (13-17)
Young adult (18-39)	Adult (40+)

American Indian or Alaskan Native	Asian or Asian American
Black or African American	Hispanic or Latino/a/x
Middle Eastern or North African	Native Hawaiian or Other Pacific Islander
White or Caucasian	Prefer not to answer
Other

Complex Double Outlet Right Ventricle (DORV) with severe imbalance	Double Inlet Left Ventricle (DILV)
Double Outlet Right Ventricle (DORV) with Hypoplastic Left Ventricle	Heterotaxy Syndrome with Univentricular Physiology
Hypoplastic Left Heart Syndrome (HLHS)	Hypoplastic Right Heart Syndrome (HRHS)
Mitral Atresia	Pulmonary Atresia
Pulmonary Atresia with Intact Ventricular Septum (PA/IVS)	Tricuspid Atresia
Unbalanced Atrioventricular (AV) Canal	Univentricular Heart (generic diagnosis)

Anomalous Pulmonary Venous Return (TAPVR, PAPVR) – veins connect abnormally but both ventricles intact	Aortic Regurgitation (rarely congenital, usually bicuspid valve related)
Aortic Stenosis (valvar, subvalvar, supravalvar)	Aortopulmonary Window
Atrial Septal Defect (ASD)	Atrioventricular Septal Defect (AVSD)
Bicuspid Aortic Valve (BAV)	Cleft Mitral Valve (isolated, not part of AVSD)
Coarctation of the Aorta	Congenital Aortic Stenosis
Congenital Mitral Stenosis / Atresia (with preserved LV size)	Cor Triatriatum (sinistrum or dextrum) – extra atrial chamber
Coronary Artery Anomalies (congenital origin issues, e.g., anomalous left coronary from pulmonary artery [ALCAPA])	Double Outlet Right Ventricle (DORV, balanced forms) – both great arteries come off the RV, but both ventricles are usable
Ebstein’s Anomaly of the Tricuspid Valve (if RV is functional enough for biventricular repair)	Interrupted Aortic Arch
Pulmonary Regurgitation (usually post-repair or rare congenital)	Pulmonary Stenosis (valvar, subvalvar, supravalvar)
Tetralogy of Fallot (TOF)	Transposition of the Great Arteries (D-TGA-complete transposition, usually requires arterial switch operation)
Transposition of the Great Arteries (L-TGA-congenitally corrected transposition, AV and VA discordance)	Truncus Arteriosus (common arterial trunk, but both ventricles present)
Ventricular Septal Defect (VSD)

1p36 deletion syndrome	22q11.2 deletion (DiGeorge/VCFS)
8p23.1 deletion (GATA4 region)	Alagille syndrome
Bardet–Biedl syndrome	Barth syndrome
Brugada syndrome	Cardio-facio-cutaneous syndrome
Cat Eye syndrome (22q11 duplication)	CHARGE syndrome
Costello syndrome	Cri du Chat syndrome (5p deletion)
Danon disease	Down syndrome (Trisomy 21)
Edwards syndrome (Trisomy 18)	Ellis–van Creveld syndrome
Fabry disease	Friedreich ataxia
GATA6-related congenital heart disease	Glycogen storage disease type III
Goldenhar syndrome	Holt–Oram syndrome
Heterotaxy syndromes	Jervell & Lange-Nielsen syndrome
Jacobsen syndrome (11q terminal deletion)	Kabuki syndrome
Loeys–Dietz syndrome	Long QT syndrome
Marfan syndrome (FBN1)	Muscular dystrophy (various types)
NKX2-5-related congenital heart disease	Noonan syndrome
Noonan with Multiple Lentigines (LEOPARD)	Patau syndrome (Trisomy 13)
Pompe disease	PRKAG2 cardiac glycogenosis
Primary ciliary dyskinesia	Smith–Lemli–Opitz syndrome
Smith–Magenis syndrome (17p11.2 del)	Timothy syndrome
Townes–Brocks syndrome	Trisomy (unspecified)
Tuberous sclerosis complex	Turner-related aortopathy
Turner syndrome (45,X)	VACTERL association
Vascular Ehlers–Danlos	Williams–Beuren syndrome (7q11.23 del)
Wolf–Hirschhorn syndrome (4p deletion)	Other

Share Your Story

Name & Contact Information

Tell Us About Your Child

Tell Us Your Story

Consent & Privacy Agreement