Help us fight against organ transplant discrimination on the national level

We’ve been fighting against organ transplant discrimination for years. For too long, children and adults with developmental disabilities have been discriminated against by the organ transplant system – despite the fact that their disabilities had no bearing on whether or not their transplant would be a success. This fight against organ transplant discrimination is deeply rooted in our belief that disabled lives are worth the same as non-disabled ones. 

Rep. Mike Honda (D-CA) is also fighting for the equality of disabled lives. Rep. Honda is sending a letter to the Health and Human Services Office of Civil Rights, urging them to issue guidance to the field declaring organ transplant discrimination against people with disabilities illegal under the ADA and Section 504. Thankfully, neither we nor Rep. Honda are alone in this fight. The following Representatives have signed on to Rep. Honda’s letter, signaling that organ transplant discrimination should not stand:

Jaime Herrera Beutler
Eleanor Holmes Norton
Gregg Harper
Raúl M. Grijalva
Cheri Bustos
Jared Huffman
Alan Lowenthal
Donald S. Beyer Jr.
Henry C. “Hank” Johnson, Jr.
Frederica S. Wilson
Tony Cárdenas
Jim Costa
Loretta Sanchez
Chris Van Hollen
Raul Ruiz

The deadline for new Representatives to sign on against organ transplant discrimination has been extended to Tuesday, October 4th, 2016 at 5pm EST.

Your help has been essential to ending organ transplant discrimination in Maryland and New Jersey, and to the ongoing fights in Pennsylvania and Massachusetts. Now we need your help to give the movement to end organ transplant discrimination a win on the national level. Contact your Representative and tell them to sign on to Rep. Honda’s letter to HHS OCR to stop discrimination against people with disabilities in organ transplantation. Call the U.S. Capitol Switchboard at (202) 224-3121 and contact your Representative today!


The story of a 9-year-old Zion Harvey has gone viral. This Black kid can set a perfect example of a strong-willed Black person, who has gone through very hard times. When he was only two years old doctors found that he had a life-threatening infection that damaged kidneys and other parts of the body. As the result, he lost both his hands and his legs below the knees but received a healthy kidney donated by his mom, Pattie Ray.

“Without my mom, I would not be right here right now. It’s been me and my mom forever,” said Zion.

Black people never surrender, especially when they are supported by the strong family,  that continues to exhibit enormous love, resilience, and optimism in the face of hard work and challenges. This kid is so brave and mature, he is a soldier of our time. 

Black people inspire me every day.



Keeping Hearts and Lungs Alive for Transplant

Heart and Lung transplants use to require transporting the donor organs on ice in coolers to the patient. Now new technology keeps the organs alive and pumping or breathing while they are being transported.  Called the Organ Care System, the organs have oxygen and blood moving through them as they are being transported.  This allows them to stay healthier for transport.  Thanks NPR for the info!

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Organ Care System.

In an organ transplant surgery, timing is critical. Doctors drop organs into a plastic bag and put them on ice. But lungs soon stop breathing. Hearts stop beating. The organs essentially shut down and start to deteriorate. This means doctors have only about five to 10 hours to get the lung from the donor into the recipient. If the travel time is too long, the organ can’t be used and goes to waste. An Andover company known as TransMedics came up with world’s first commercial, portable, warm blood perfusion system that allows a new type of organ transplant, called a living organ transplant. This new technology, called an Organ Care System, is designed to maintain organs in a warm, functioning state outside of the body to optimize their health and allow continuous clinical evaluation. Hearts beat, lungs breathe, kidneys produce urine and livers produce bile. The device is currently not FDA approved but is undergoing clinical testing.

This device allows surgeons to take hearts from donors that formerly wouldn’t have been eligible. Possible donors have been limited because hearts were taken from people who were brain-dead but still had healthy bodies. The “heart in a box” can reanimate hearts that have stopped beating in bodies that have undergone “circulatory death,” where the heart itself is no longer functioning, not just the brain.

Baltimore eight-year-old becomes the world's youngest double hand transplant recipient

Zion Harvey lost both of his hands and feet at the age of two after they became infected with gangrene. Zion received the new hands earlier this month at The Children’s Hospital of Philadelphia. A 40-person medical team used steel plates and screws to attach the old and new bones. Surgeons then delicately reconnected arteries, veins, muscles, tendons and nerves.

Please Help This Baby Get a Heart Transplant

My friend Brittany gave birth to her baby, Emery, a few weeks ago. Emery is a little over six weeks old now and is desperate need of a heart transplant. She has Left Ventricular Cardio Vascular Hypertrophy and without a transplant she will not survive. Emery is on medications and will be undergoing procedures to help prolong her life until she can receive a transplant. The expenses of Emery’s hospital bills, the traveling and all other expenses incurred are greatly mounting and this family is already under a great amount of stress. Please help them to ease this financial burden so they can solely concentrate on Emery’s well being. Here is a link to their GoFundMe page. If you cannot afford to donate, please help by sharing this, it could save a baby’s life.