Jamie Lober to Be Recognized as Leader in Rare Disease Fight

Jamie Lober has been through it all.  She has endured major life transitions, a big move, career shift, love, loss, sickness and what she refers to as some lessons she never wanted to learn.  “I have come to conclude that the number one rule about having feelings is to make sure that no one knows you have them and you should do just fine,” said Lober.  Refusing to elaborate, she tells that she wishes some things could be different but feels she has definitely found a purpose for herself.  “I like to think that some pieces fell apart so others could fall into place and some have and on other pieces, I am still waiting,” said Lober.  Most notably, Lober has been sharp as a sword and fast as a cheetah to make a noticeable mark in the rare disease arena.  “My father continues to win in the fight against rare disease and there is a big sense of accomplishment in my house,” said Lober.  

Lober is literally jet-setting with her knowledge and talent and is heading to the East Coast to be recognized for shaking things up through rare disease education, advocacy and funding.  “This was certainly not on my original to-do list but I realized that in order to change my dad’s life I needed to change my priorities,” said Lober.  She has been asked to join the National Institutes of Health in celebration of their sixth annual Rare Disease Awareness Day which is supported by the NIH Office of Rare Diseases Research, the NIH Clinical Center, other NIH Institutes and Centers; the Food and Drug Administration’s Office of Orphan Product Development; other Federal Government agencies; the National Organization for Rare Disorders; and the Genetic Alliance.  “The idea behind this day is to raise awareness among the general public about rare diseases, how it affects patients’ lives and to stress the importance of research to come up with new diagnostics and treatments,” said Lober.  Lober feels that she has made a lot of sacrifices over the past few years in order to advance the medical community and legislators who are trying to be victorious in the rare disease fight and she would not have it any other way.  “I am not traveling for the recognition but to show my appreciation to the doctors that I know as heroes to my family,” said Lober.  

The statistics on rare disease show that it is just as it sounds – rare.  “There are about 7,000 rare diseases that have been identified in our country, half of which are genetic and 80 percent of which affect children,” said Lober.  Every year the theme of rare disease day is different.  “This year there is a wear that you care campaign where supporters wear a genes ribbon and their favorite pair of jeans to demonstrate that they support individuals who are fighting rare diseases,” said Lober.  For Lober and other educators and advocates like her in the rare disease community this year is not like the rest.  “Our observance is particularly significant because this is the 30th anniversary of the Orphan Drug Act which offers incentives to companies with the hope that they develop treatments for rare diseases and it was signed into law by President Reagan,” said Lober.  

As for what South Floridians can do to help make progress in the fight against rare disease, Lober tells that it starts by being nice and treating others with respect.  “God does not care how many times a month you go to church or temple or how many bible verses you have memorized, he cares about how you treat others,” said Lober.  In her own life, outreach is a major theme in terms of culturally breaking barriers as she leads in the Latino community, politically registering new voters and reaching out to all people and by disseminating health information to anyone and everyone who will listen.  Her interpersonal skills are strong yet she gets down to business and does not partake in anything that does not benefit others.  “I would have better people skills if I encountered better people on a regular basis but there are some things we cannot control,” said Lober.  

Lober makes a plea to those who are able to donate to the National Institutes of Health rare disease program which will help find better treatments for people with paraganglioma and other rare conditions.  “This is not like a nonprofit or neighborhood charity; if you really want to know where your dollars go, I can vouch for this place,” said Lober.  Staying down-to-earth and as non-materialistic as they come, Lober continues to make a case for NIH saying that money is everything.  “First, anyone who tells you that money is the root of evil is clearly broke and second, if you think it does not buy happiness you do not know where to shop; you need to know what to do with your money,” said Lober.  Lober goes on to say that patients with rare diseases are counting on support around the country.  “What you may not know is that on March 1, the automatic budget cuts that apply to government agencies that people are referring to as sequestration will take effect if the Democrats in Congress cannot figure out how to fix the budget and this is going to have a devastatingly harmful effect on medical research programs at NIH and will negatively impact the review of potential new therapies from the FDA,” said Lober.  

As she comes with a solid track record of leading on the subject matter, Lober insists that she will not be backing down any time soon.  “Good things like finally being able to represent my state in the U.S. Senate are not going to come to me because I waited patiently but it might come because I work, work, work and never give up,” said Lober.  While her experiences have not been purely positive, she stresses the importance of taking chances and always chasing after things you believe in.  “You cannot let success get to your head or people will not be able to stand you but you also cannot let failure get to your heart or you will be personally and professionally stunted,” said Lober.  With her confident but compassionate attitude, it is thought that her upcoming travel will help her reach brand new highs in the movement she is so forcefully spearheading to eliminate rare cancers as she has physicians, legislators and citizens on her side.  “I cannot predict the future but I can say that everything I have done so far has been more than worth it,” said Lober.