WHAT DONORS WANT
The ALODF is here to help you, living organ donors, in whatever way we can. Please share your ideas with us. info@helpinglivingdonors.org
Financial assistance: We realize that one of the greatest barrier to donation, and the greatest hardship for many who donate, is trying to pay bills while on unpaid leave for the time it takes to recover from organ donation surgery. Check your state’s laws and resources under “Benefit by State.” Also see the list at “Other Living Organ Donor Resources.” For help with unpaid leave while recovering from surgery, see “Applying for Help from the ALODF.” The ALODF will try to help living organ donors in whatever way we can, so covering all living organ donation related expenses is a goal of ours regardless of the donor’s income. We do believe recipients should do what they can, but beyond that, society should step in and help. We help donors with direct grants when we have the funds, but we also help with online campaigns, case management (we will help donors look for funding) and escrow services which can help recipients mange donor funding.
Support Group: There are several support groups on the Internet for members of the transplant community. The ALODF has a closed group that requires approval for participation and accepts all kinds of living organ donors – kidney, liver, and others, and also accepts people who are considering donation. The group does not allow organ recipients or people seeking organs in the group and monitors the discussion to keep it relevant to issues important to living organ donors. ALODF Facebook Support Group.
Community Outreach and Peer Program: Sometimes an online group discussion is too public and not personal enough. The ALODF also maintains a list of living organ donors who volunteer to go the extra mile to help donors and potential donors with whatever they need. This may mean a donor mentor, that is someone who has gone through the donation process, recovery, or has suffered a complication, to talk to on the phone or in person. It may mean advice for where to stay or eat when the donor is traveling to an unfamiliar city to do the donation. It may mean a ride to the airport, picking something up from the drugstore, or other more involved volunteer activities depending on a donors needs.
The ALODF is willing to put donors and potential donors in touch with the people who have volunteered to be on the ALODF community donor buddy list in their town or near their transplant center. It is important for anyone who takes advantage of this resource to know that the ALODF has not vetted list participants in any way for trustworthiness or otherwise. The same precautions taken when meeting anyone new on the Internet should be taken when choosing to contact someone from the ALODF list of volunteers. Contact Sigrid if you would like to find a mentor in your area.
The ALODF is working on building an on-the-ground community presence wherever we possibly can to both educate and assist people considering living organ donation and help living organ donors through the various phases of the donation process and afterwards. We hope to generate community involvement in the whole process both to generate awareness and to encourage in-kind support within the communities where donors live. So far we have two local branches of the ALODN in the Washington, DC area and the Philadelphia region.
Alternative ways to tap into networks of neighbors and friends include reaching out to local churches or organizations like Lotsa Helping Hands or Caring Bridge. The only disadvantage of such groups is that they do not necessarily involve living organ donors.
Someone to Lobby for Living Organ Donors
Even before the ALODF or ALODN were created, Stop Organ Trafficking Now! was set up as a lobbying organization that represented living organ donors and only living organ donors. That group is still active, but progress is slow, which is why the ALODF was created to provide some relief for living organ donors while the work continues to get Congress or HHS to create policies that do more to help living organ donors. Please consider signing the Stop Organ Trafficking Now Petition! On the list of priorities are coverage of donation related expenses, including lost wages and medical expenses associated with complications related to the donation. Others include, more healthcare coverage, job protection, more and better long term studies regarding donor risks, better donor priorities should they or a relative need an organ, and more. See Stop Organ Trafficking Now!
Help Finding and Managing Resources
The ALODN staff is always ready to help donors in whatever way they can. We will help answer questions or direct donors to where their questions can be answered. We will help donors prioritize their grant applications and fundraising efforts. We will also, for a small service fee (which can be waived with showing of financial need), manage all contributions to donors from recipients and other sources in an escrow account to be distributed as needed. This new service releases both donors and recipients of the need to worry about the details associated with financial matters and compliance with federal laws regarding distribution of funds to donors. Also because the ALODF is a charity, any funds collected and distributed to donors through an ALODF escrow account are non-taxable grants, not taxable income as would be the case if funds are raised through a program like GoFundMe. More about the ALODF escrow service.
Public Education
We consider every time we speak to a donor, donors’ family members, recipients, and social workers or living organ donor coordinators part of our program for public education, but we also have more formal programs. Our website is being updated with new information weekly (our newest addition is a list of potential donor complications in plain English), we have a newsletter that goes out to almost 6000 subscribers, and we are available to do public education talks on the organ shortage and living organ donation. The educational session are as neutral as we can make them. We provide information and do not try to persuade our audience to donate. Oddly enough, in some of our talks, the most interesting result is that people decide to sign up to be deceased organ donors. If interested in having someone from the ALODN staff come speak at your church, local club, or other venue, please contact Sigrid.
Are you a Living Organ Donor With A Suggestion for how We Can Do More?
Please share your ideas with us.
Please note the ALODF disclaimer at –click here.