Our Mission

MISSION:

Our mission is to serve American living organ donors. We neither encourage nor discourage donation — we work with donors to help them make the most informed decision possible, and if they decide to donate, we work to make their donation experience as medically and financially safe as possible.

We will work to protect the rights living organ donors. If they are sure they want to donate, we help them achieve their goal whether saving the life of a loved-one or one or more strangers. We are here to help kidney donors, liver donors, and every kind of living organ donor. Listening to donors, finding out what they need, and helping them get it, is what we are all about.

As new voting members of UNOS and elsewhere when opportunities present themselves, we work for laws, regulations, and policies, that protect living organ donors. For example, coverage of lost wages; more research on the long-term effects of organ donation; and to prevent discrimination in both health and life insurance policies.

The ALODF wants to stop the cycle of abandonment felt by many living organ donors. Donors are helped by some government and private organizations to get them to and from the transplant center but feel forgotten after they’ve donated. We help donors with support groups and living organ donor networks and also financially if they must take unpaid leave. We feel strongly that society’s obligations to living organ donors does not end with the transplant.

While our services are available to all American living organ donors, we also recognize and are working to help correct the social injustice of a transplant allocation system disadvantages the poor, blue-collar workers, and minorities. The law allows living organ donor recipients to pay their donors expenses, but does little to take care of donors in communities where their intended recipients can’t afford to help with a donor’s expenses.

The ALODF is here to help. We will support donors in their decisions to help save a loved-one or stranger –with information, support groups, in-person mentoring by other living organ donors in their community, and financial assistance for those who have no option but to take unpaid leave to donate.

We have never turned away an American living organ donor who has come to us for help. If we do not have the financial resources to help a donor outright with a legal and verifiable donation related expense, we will offer to help the donor with fundraising to pay those expenses.

 GOALS:

Our one and only goal is to help American living organ donors so it is easier for them to save the lives of fellow Americans. There are plenty of organizations that help transplant recipients and their families, but few with the primary purpose of helping make organ donors’ lives safer and easier, with all the services and assistance someone who saves another person’s life deserves. These services often are needed by people who might be prevented from donating for socioeconomic reasons, but we help all donors regardless of economic status. We believe no donor should suffer financially for his/her good deed.

To that end we will:

1. Provide information to help donors make informed decisions, including the most recent articles and literature on the risks and benefits of living organ donation.

2. Provide resources, state by state, so donors can look up what services and benefits are available to them where they live or in the region where they are considering donating (support groups, local charities, and information on hospital and government programs for living donation).

3. Provide a closed online support group for only living organ donors and those serious about becoming living organ donors.

4. Provide a network of in-person mentors for living organ donors.

5. Provide actual financial benefits and support services to donors to the fullest extent permissible under U.S. law.  Such services, funds permitting, will include travel, lodging, lost wages and other forms of support needed for donors and their caregivers to help reduce the burden of living donation.

NOTE: Financial benefits (charity grants to donors) are distributed based on a first-come-first serve basis.  Please see “Applying for Help from ALODF” button on the right hand side of our home page for information on when we will next be accepting applications for assistance.

The number of donors we can help is directly linked to the amount of donation we receive.

 VISION:

We would like to see a world where the decision whether or not to help save a fellow American by being a living organ donor isn’t a financial decision. To accomplish this vision, we support the Center for Ethical Solution’s Save Lives, Save Money Now! initiative to try to change U.S. law to help living organ donors with their expenses.  In the meantime, we at the American Living Organ Donor Network want to do whatever we can under current law to limit the financial and social burdens living organ donors face.

HISTORY:

The American Living Organ Donor Fund (ALODF) was started by Sigrid Fry-Revere and Mike Mittelman in 2014. Sigrid asked Mike to help her create a charity after her efforts to lobby Congress for change was making too little progress too slowly. Sigrid had tried to become a living donor, but ran into challenges at the health system level based on the transplant center’s misunderstanding of the law with respect to compensating donors for their expenses and lost wages. Michael wanted to start an organization in his mother’s memory. She donated her kidney to him in 2001, and she passed away a few years later.

They started the American Living Organ Donor Fund, a GuideStar Platinum-rated 501(c)(3) with mission to make living organ donors “whole” by ensuring their rights are protected and by ensuring the procedure is cost-neutral.  The Living Organ Donor Fund is need-blind and makes direct grants to living organ donors both pre and post-donation to cover donation related expenses (including but not limited to lost wages, travel, lodging, child care, caregiver, etc.).  We are here to serve all kinds of living organ donors – kidney, bone marrow, liver, and lung. Living organ donors on average spend $5,000 out-of-pocket, but sometimes costs go as high as $20,000. Only 8% of Americans can afford to donate an organ without using their savings or going into debt. In less than 3 years we have helped make more than 100 living organ donation transplants possible. Living organ donors are doing enough by donating an organ, so they and their families should not also have to suffer financially.  Being a living donor should be cost neutral.

In 2016, Sigrid and Mike expanded the original mission of the Fund to create the American Living Organ Donor Network (ALODN) which has the broader mission of helping living organ donors with whatever they need, not just funding.  In addition to making direct grants, the Network has a large variety of initiatives, including information for donors, educating the public on living organ donation, and working on policy initiatives  to address living organ donors needs and protect their rights. The Network also has an online donor and potential donor only support group with close to 250 members and a new program to provide pro bono psychological couseling if desired. We listen to living organ donors and work to implement what they need to make more donations possible and to make them safer both medically and financially.