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Introduction To Hypoplastic Right Hearts

Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with specific Congenital Heart Diseases that result in a hypoplastic right ventricle.

See "Join Us" for membership requirements. Our support group is only for this subset of congenital heart disease, but we welcome other CHD families and non-parent friends and families to view our public web resources below. We will be adding more content over time.

THIS SITE IS NOT INTENDED FOR MEDICAL ADVICE - FOR ALL MEDICAL ISSUES CONSULT YOUR DOCTOR, PARTICULARLY YOUR PEDIATRIC CARDIOLOGISTS.

Heart ReUnited 3: UCLA, Thursday July 11 - Saturday July 13th, 2013

1. Make your reservations at the onsite facilities (arrive Wed. the 10th) at the Tiverton House http://tivertonhouse.ucla.edu/ You can cancel as late as 3:00 pm Pacific time on July 9th, but you can't get a room if they run out! The rate is $139/night but there is no tax because it's a UCLA event. Be sure to tell them you are staying for a UCLA medical school conference. Reservations have already been made by some of the planning committee and it was really easy, but you need to say that to get the $139/night rate.

* Please make note of sleeping accommodations in the room you are reserving, not all rooms have the same bed space.

2. Create a First Giving Page for your share of the Hotel bill and conference expenses! Your goal should be $850 to cover all events and hotel. If you can't raise it all, those who raise more will help even it out, but the first $300 goes to food and activities, the next $550 goes to hotel. Here's the fundraising link http://www.firstgiving.com/22303 to get started. Here is my page: http://www.firstgiving.com/fundraiser/amanda-adams-4/adamsfamilyfundraisingpage email me at amandaroseadams@gmail.com if you need help with this part. Airfare and transportation is the responsibility of each individual family, sorry we cannot help with that.

More to come on family events, conference topics, and all the great things we'll be doing. There will be information for families who haven't had the Fontan yet, who won't have a Fontan and who are well past that and looking forward. As always, family activities will be fun and heartwarming. I cannot tell you how much it means to our kids to know they are not the only ones with scars on their chest or the only brothers and sisters who live in the shadow of a heart hero. Not to mention what it means to the parents! Join us on our tenth anniversary and celebrate how far we've come!

Also, if anyone is considering attending but wants more information or to talk about the conference further before making a decision, they can email Debra Jorgensen debback@yahoo.com or call her at 619-890-9583.

To download forms, click on links below:

Hearts United 3 Registration Form

Hearts United Travel Profile Form

Create a HRH Carepage

Get emotional support when caring for a child with congenital heart disease

CarePages provide patients and families the opportunity to post updates, pictures, contact information and visiting hours, thus reducing family and hospital staff time spent relaying this information. To access CarePages, patients and families will visit www.carepages.com/hypoplasticrighthearts. Help is available for the CarePages by contacting support@carepages.com or by calling 1-888-852-5521, Monday through Friday from 8 a.m. to 6 p.m., Central time

What Friends Do

When a life-changing event happens, friends and family want to help! The WhatFriendsDo.com webtool is a FREE website that can help family and friends form a "Team" and respond in an organized and helpful way. Helping a friend through a life-changing event involves lending a hand with meals, transportation and other tasks. These events also call for understanding, love and uplifting support.

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