My Nonprofit Reviews
Joseph Hillenburg
Review for Children's Cardiomyopathy Foundation, Inc., Tenafly, NJ, USA
Our son was diagnosed with idiopathic (ie. unknown reason) Dilated Cardiomyopathy at 1 month of age by the children's hospital in Chicago. This hospital, which is CCF-accredited and has collaborated in its research efforts, rapidly recognized that his form and progression of cardiomyopathy required him to be listed for heart transplantation.
While we were waiting for his new heart, we participated in the CCF online discussion community and drew from CCF educational resources so that we could become better informed about this terrible condition which had affected our young son. Having these resources proved to be invaluable as a coping mechanism.
After transplant, we found that CCF didn't "let go" (unlike some other "pre-transplant" support organizations) and that we were in company with community members and staff members who understood our issues. We decided that this organization was so helpful that we have volunteered time and contributed money to further its cause and "pay it forward" to families like our own.
One key aspect is that the genesis for National Pediatric Transplant Week, which celebrates kids like ours (and - importantly - their donors!) was an idea that originated with CCF. This concept, which benefits all pediatric transplant candidates and recipients, is an opportunity for families to tell their stories and to encourage adults to register as organ donors, as well as to make families in general aware of the world of transplantation.
Review for National Foundation for Transplants, Inc., Memphis, TN, USA
Most people probably assume that the role of an organization like NFT is to help people to fund transplant-related expenses. This they do, but they also play an important role in advocacy and outreach. For example, in advocating for their community, they will engage in policy activity. Their social media outreach, however, is extremely strong and they will go to great lengths to educate and inform the community on not just patient stories, but of helpful tips, PSAs, etc. This serves to help members of the transplant public that don't otherwise need NFT's services.
