Advocacy and Fundraising
Through national campaigns, awareness & remembrance events, and community-led fundraisers, Heterotaxy Connection brings families, advocates, and supporters together to drive progress and amplify the impact of our shared mission.
Your small monthly contribution can make an ENORMOUS impact!
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2026 Family Apparel Shop
Every purchase helps turn awareness into action, driving change, and strengthening the Heterotaxy community. TOGETHER WE THRIVE.
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Awareness Day 2026
Spread awareness in style! Available for purchase in youth and adult sizes, various styles, and colors!
Heterotaxy Awareness
The official Heterotaxy Awareness Day is May 4th, the birthdate of Björn Ivemark, who was among the first to document congenital anomalies (Ivemark Syndrome) similar to what we know today as Heterotaxy. However, spreading awareness and support for the Heterotaxy community happens all year long.
SHARE YOUR STORY
Unleash the power of storytelling and draw others toward the reality of life with Heterotaxy.
Spread awareness by wearing Heterotaxy Connection gear, hosting a local awareness day gathering or activity, hold an information booth at a local event, and share on social media.
SPREAD THE WORD LOCALLY
Fundraising spreads awareness with the added benefit of having a direct impact on the Heterotaxy Connection community
HOST A FUNDRAISER
Remembrance Day
It is our honor to speak their names and share their stories.
Each year on November 4th we gather as a community to remember the warriors we've lost to Heterotaxy. We invite every family who has lost a loved one to Heterotaxy to fill out this form if you would like us to include them in our next day of remembrance.
Awareness Day Proclamations
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A Heterotaxy Awareness Day proclamation is an official statement issued by a state or local government recognizing May 4th as Heterotaxy Awareness Day. It helps raise public awareness, supports families affected by heterotaxy, and encourages communities to learn more about this rare condition.
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Requesting a proclamation helps bring visibility to Heterotaxy and encourages policymakers and communities to support awareness, education, and research.
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Any resident of a state (patients, parents, caregivers, or advocates) can submit a proclamation request. You don’t need a formal organization or special credentials.
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Proclamation requests are typically submitted through the Governor’s, Mayor’s, or local elected official’s website. Most offices have an online proclamation request form. If no form is available, requests can usually be submitted by email or mail to the official’s office. Requests should include the proposed proclamation text, the requested date, the purpose of the proclamation, and contact information. Submission deadlines vary, but requests are often required several weeks in advance.
Here’s a voicemail / email script you can use if you’re not sure what to say when you contact your state officials:
“Hello, my name is [Name], and I’m calling to ask about requesting a proclamation. I’m hoping to submit a request for Heterotaxy Awareness Day on May 4th.
I wanted to ask what the preferred process is for submitting a proclamation request, whether there’s an online form, an email address, or specific information you need.
Thank you very much for your time and assistance.”
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No. State and local governments do not charge fees for issuing awareness day proclamations.
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Processing times vary, but most offices respond within a few weeks. Submitting early increases the chance of approval before May 4th.
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Awareness Day proclamations aren’t just for US states! Whether you’re in Canada, Australia, or anywhere in between, you can contact your local government to ask that May 4th be designated as Heterotaxy Awareness Day.
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Here is sample text for a Heterotaxy Awareness Day proclamation. Make sure to change it to personalize it for your state or province, and feel free to add more information about your family’s journey with Heterotaxy.
PROCLAMATION TEMPLATE — HETEROTAXY AWARENESS DAY
WHEREAS, Heterotaxy (sometimes called heterotaxy syndrome or heterotaxy spectrum disorders) is a rare congenital condition in which the internal organs, including the heart, lungs, liver, spleen, and intestines, are abnormally arranged within the chest and abdomen due to differences in left-right body patterning; and
WHEREAS, Heterotaxy can cause complex medical challenges affecting multiple organ systems, often requiring specialized care and coordination among multidisciplinary medical teams; and
WHEREAS, the causes, symptoms, and severity of heterotaxy vary widely, and the condition may be life-threatening in infancy or persist with lifelong health challenges; and
WHEREAS, due to its rarity, public awareness of Heterotaxy and its impact on individuals and families remains limited among the general public as well as many health professionals; and
WHEREAS, continued research, improved clinical understanding, and increased support for affected individuals and families are essential to improving outcomes and enhancing quality of life; and
WHEREAS, Heterotaxy Awareness Day provides an opportunity for families whose lives have been touched by this condition to celebrate resilience, honor loved ones lost, recognize dedicated health professionals, and share experiences to educate others; and
NOW, THEREFORE, I, [Name, Title], hereby proclaim May 4th, [YEAR] as HETEROTAXY AWARENESS DAY in [State/City/Town/County], and urge all residents to observe this day with appropriate programs, activities, and increased awareness of Heterotaxy and its impact on families and the medical community.
IN WITNESS WHEREOF, I have hereunto set my hand and caused the Seal of the [State/City/County] to be affixed this [day] of [month, year].
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You can share the announcement on social media, with local news, or within support communities to help spread awareness. Make sure to tag us in social posts so we can celebrate with you!