12/05/2014 04:21 pm ET Updated Feb 04, 2015

Reflections on Political Courage and a Note of Deep Thanks

2014 will no doubt see many important milestones but for the many thousands of Americans living with neurofibromatosis (NF) and their family members, the retirement of someone who served as their champion for almost 20 years is certainly bittersweet, but requires celebration at the same time. Neurofibromatosis, for which there is no cure or effective treatment, causes uncontrolled tumor growth anywhere along the nerves on or in someone's body. It is a devastating condition and affects 1 in 2,500 births.

In 1995, Iowa's Senator Tom Harkin met with two neurofibromatosis advocates who wanted to start a research project, under the auspices of the Army, on the little known genetic disorder. Senator Harkin, up for re-election the following year, was being targeted heavily at the time by the opposition. In addition, he was faced with the historical fact that no Democrat from Iowa had ever been re-elected to the Senate for over 100 years.

The goal for the two NF advocates was to seek an $8 million appropriation to the Congressionally Directed Medical Research Program for NF research, and they asked Senator Harkin to be the lead sponsor on the Senate side. Despite his concern that his opponents might use it against him, Tom Harkin agreed to serve as the author of the 'Dear Colleague' letter in support of the appropriation.

In the eyes of one particular participant at the time, this was seen as the greatest single act of political courage that he had ever seen. By the very fact of agreeing to act in that capacity, Senator Harkin ran the risk of putting his political career on the line to support what was then (and sadly to this day remains) a little known genetic disorder. By taking the lead in 1995, Senator Harkin helped place a marker on the map for those afflicted with NF and hope for the future . It was the right thing to do and as a result so much has changed for the better on the NF landscape.

Fast forward to 2014. Because of Senator Harkin's willingness to step up and be the sponsor, the research that has gone into NF over that 20 year span since 1995 is tangible and promising. From clinical trials to reduce tumor growth and learning disabilities, to animal models to better understand the progression of the disorder, to the hundreds and hundreds of researchers and physicians looking to find a cure or treat NF - all this progress can be traced to one man's willingness to show political courage in the face of challenge.

Every NF researcher or scientist who ever received a grant from the CDMRP owes a debt of gratitude to Tom Harkin for starting the ball rolling. Families and individuals living with NF now have more hope than ever because of Senator Harkin's willingness to step up. Certainly, there is much more to be done - such as finding the cure - but if it weren't for Senator Harkin, the world for NF patients and families would be a great deal darker and bleaker.

As Tom Harkin retires this year, the NF community owes him a tremendous note of thanks. Over the years, Senator Harkin not only served his Iowan constituents well but, by doing what he did, he served NF constituents from all across the US irrespective of political affiliation, gender, class, or age. That is a shining example of true leadership and courage.