By: Charles Horn

 Jamie Lober jumped in the boxing ring and started making big, winning punches in the rare disease fight at the beginning of 2013.  “My first year doing this was very significant because 2013 was the 30^th anniversary of the Orphan Drug Act and the National Organization on Rare Disorders,” said Lober.  During her speeches she emphasizes the urgency she feels toward improving the government’s approach to healthcare policy and the dire need for what she refers to as ‘the right research,’ themes that she continues to play up in interviews.  In a large public forum consisting of nearly 50,000 physicians, legislators, patients, researchers and advocates, Lober suggested that she shares the spirit and strong will of John McCain and the heart of, well, herself.  “I know her to be classy yet opinionated and the kind of person that everyone loves being around,” said Francine Hamp, 86 of Jupiter.

Lober addressed her first rare disease day forum in the midst of a bitter heartbreak that she opted to publicize and her father’s health challenges.  “My father always springs back and by having solid purposes for myself, no matter what happens to me, I never find myself lost,” said Lober.  Lober happily shared that her father is doing well thanks to the guidance of the National Institutes of Health and seemingly her personal life is not lagging behind one bit.  “I was blessed to meet a genuine guy who wholeheartedly supports my endeavors and whose family closely resembles my own and it has given me a brand new outlook,” said Lober.  She elaborates without hesitation.  “We have overcome a lot, he has opened me to new experiences and things are just fun,” said Lober.  With a small but mighty support group she anticipates what she can bring to the rare disease fight in the coming year.  “I try to keep a maverick philosophy where no matter how long you are doing something, you always keep things fresh,” said Lober.

In February 2014, Lober will make her way back to the nation’s capital to address several forums about her vision for the future of rare disease.  “I hope to join with global partners to grow my impact and reach every time and that is why I am so fond of this next year’s theme of celebrating teamwork, meaning doctors, patients, caregivers, physical therapists, everyone involved,” said Lober.  With unusual yet extraordinary accomplishments for her age, Lober’s attitude is one of acceptance.  “Sure there are traditions I would rather have and do have other than being recognized as a leader in the rare disease fight but this is a ball that my family was thrown and I refuse to miss an opportunity to pitch back on our behalf,” said Lober.  When asked if there is a political agenda behind her involvement, Lober smiled and shared that Republicans and Libertarians alike have openly embraced the cause and almost entirely joined caucuses to get things done in favor of the rare disease community.  As a lifelong staunch Republican, Lober stated her case on the so-called party divide.  “One issue is that the Tea Party is destroying the unity that we could have as a party and the second issue is that we have to start opening our minds and ballots to some of these self-identifying libertarians as they are just Republicans who own bongs,” said Lober bravely.

Fast to point out the failures of Obamacare, Lober insisted that there are viable alternatives.  “U.S. Representative Tom Price of Georgia’s patient-centered healthcare reform bill called the Empowering Patients First Act saves trillions while reducing costs, increasing access and yielding savings,” said Lober.  Lober described Price as a mentor and a principled leader whose approach is to pursue solutions that empower patients and doctors rather than Washington.  She added that he was an orthopedic surgeon and shares her interest in sports medicine.  “The core principles of healthcare are supposed to be choice, quality, innovation, affordability and accessibility to name a few and Obamacare violates all of the above,” said Lober.  People of all professions and walks of life enjoy listening to Lober’s perspectives on the issues.  “She is a vibrant leader and the go-to person in our area on quality healthcare policy,” said William Stover, 61 of Palm Beach.

As for whether our community has made progress in terms of cancer education, Lober told that we have a long way to go.  “We are in a society where women are more concerned about the size rather than the health of their breasts,” said Lober.  She finds that workplace wellness programs are practically nonexistent and there is a lack of empathy.  “Basically people have to get well before companies realize they are expendable,” said Lober.  The broad spectrum of rare disorders and fairly common symptoms that can hide underlying rare diseases makes initial misdiagnosis common.  “Since there is a lack of scientific knowledge on rare disease, there can be a delay in diagnosis, social and financial burdens and difficulties with access to care,” said Lober.  A more comprehensive approach seems to be in the works.  “We have made ongoing significant gains due to the increase of international cooperation among clinical and scientific researchers as well as the sharing of knowledge as a result of conferences, gatherings and the internet,” said Lober.

While Lober talks about healthy living on a daily basis in her professional life, her personal life has a little more leniency.  “I am a doer and I love staying active but I cannot say that any of my yoga pants have ever been to yoga,” said Lober.  Generally speaking, Lober told that she goes for a brisk walk at the beach more days than not and eats everything in moderation.  During her time in South Florida, she has found substance abuse and body image to be the biggest contemporary health issues that the community faces.  “For some reason when you go out you will find tons of girls taking their picture in bathroom mirrors thinking they look cute but the reality is that it makes them look like they have no friends,” said Lober.  Having sat for a year on the Palm Beach County Substance Awareness Coalition’s prescription drug task force and emerging issues task force, we attempt to find out what is new.  “There is really not much new; of course there are new drugs all the time but the bigger problem is old drugs being reintroduced and more potent than before,” said Lober.  Lober connects her involvement with the Coalition to the underlying theme of her dream to change healthcare policy in the United States.  “I am there because I want to raise public awareness, advocate for change to schedule 1 drugs which have a high tendency for abuse and have no accepted medical use and of course want to keep my eye out for the next big thing so we can warn others of new potential dangers,” said Lober.

As Lober prepares to be recognized in the rare disease fight for the second year in a row, we ask if there is anybody that she would like to thank and her response may surprise you.  “The Office of Rare Disease Research of the National Institutes of Health, the Office of Orphan Products Development of the Food and Drug Administration and the Social Security Administration deserve recognition for supporting rare disease day and making my job much easier,” said Lober.  In her free time, Lober enjoys playing the piano, swimming and spending time with those closest to her.  “I really am just an ordinary person with larger-than-usual dreams,” said Lober.  When asked about her plans for the future, Lober responded without pause.  “I am committing myself to a community that might otherwise not get the attention it deserves,” said Lober.  Appreciation is clearly reciprocated.  “Lober is the patient advocate of a lifetime who walks the walk and talks the talk and it is because of the awareness she continues to raise on behalf of the Pheo Para Troopers patient initiative and otherwise that millions of people have hope,” said Betsy Tomlin, 71 of Delray Beach.