Our Journey to Translational Research

I’m writing this on the eve of the most important road trip of our lives.

On 6/15, Kona Bear my sweet Boston Terrier/French Bulldog mix was diagnosed with a 3cm Glioma tumor in the right frontal lobe. The day prior, she presented alarming neurological symptoms that her vet was ill-equipped to handle. Her diagnostic odyssey was similar to mine.

That fateful Friday afternoon, Kona’s neurologist pulled me in a room and showed me the MRI images before the entire scan had been completed. My worst fear was confirmed. My best friend was given 4-8 weeks to live without an intervention.

Fast forward two weeks, and we received confirmation from Dr. Bentley at Purdue University that Kona will undergo surgery to remove her tumor on July 5th. Three weeks after she first showed signs of something being wrong. In the time between diagnosis and our trip, my life has been filled with extreme highs and lows. It was topped off with Kona having a seizure on my face this past Friday night. I was asleep in bed with her when she walked over to me before it started. Thankfully, I had an idea of what to do. Before that, Kona had not had a seizure in my presence (if at all).

Once I began researching Canine Glioma, I was shocked to discover how closely linked dogs are to humans. We are the two species that grow primary brain tumors and our DNA is similar, making research on canines very valuable and easier to translate for human trials. Additionally, dogs and humans live in the same environments and are exposed to similar variables, so the documented side effects from clinical trials are more meaningful. Despite this, the outcomes for both canine and human glioma are grim.

I am dedicated to saving Kona and furthering science. I believe Kona holds data that can help researchers better understand glioma, the effects of surgery and chemotherapy for these tumors.

Tomorrow we embark on a new journey to change translational science.

To follow Kona’s journey, like her Facebook Page: Kona Strong.

 

Finally Found My New Normal

My mother, Judge Diaz and I after being officially sworn in.

I apologize for yet another lengthy absence from my blog. I’ve been diverting all my energy into a few big projects lately. Most notably studying for the Florida Bar Exam. If you know anything about the test, you have probably heard just how stressful it is! My last blog post was right after the exam. I needed a break from blogging.

I’m so excited to announce that I passed the bar exam and was sworn in on April 16th! It was a crazy morning, I barely slept the night before, Sjögren’s was causing a nasty flare, and I was nervous. When I saw I passed, I cried! It was great to be surrounded by friends, my professors and my family during the ceremony.

Since then, I have been busy establishing my new normal. I had the chance to chat with Marco Rubio and thank him for co-sponsoring the OPEN Act. He is enthusiastic about getting it passed, the next time I am in DC, we are going to make sure everyone is on the same page strategically to get it done.

As for my work- I continue to consult with pharmaceutical and biotech companies on various projects, ranging from patient advocacy plans to legislative strategy. I am also Of Counsel to the Lerman Law Firm. I am excited to be using my legal education to continue the pursuit of making the world a better place for rare disease patients.

I look forward to rebuilding my life after all of these great things, and continuing the push forward. Thank you for being a part of my journey.

Achievement Unlocked: Law Degree

I did it. 

On December 7th, I graduated from law school with a concentration in health law. Last week, I took the Florida Bar Exam. Life has been pretty hectic since I last blogged, but I am excited to get back into it.

In June, I was awarded a scholarship to Seton Hall School of Law’s Healthcare Compliance Certification Program. It was a fantastic week in New Jersey, really fine tuning my knowledge of federal compliance regulations. I was also alarmed at how these laws can negatively impact the rare disease community. Expect more on this topic soon.

In August, I was invited to attend a special meeting with the Venezuelan dissident community in Miami, which was being held by Senator Marco Rubio, Governor Rick Scott, and Vice President Pence.

In September I had a chance to chat with Allen West, a great supporter of the rare disease community.

In October, I was invited to speak at the World Congress Patient Advocacy Summit. My speech was on the 21st Century Cures Act, and the role patient advocacy played in forming the legislation.

Of course, while I was in Washington, DC I made sure to meet up with Congressman Bilirakis to continue working on the OPEN Act.

In December, I met with Corey Lewandowski and David Bossie. We had a chance to chat about the OPEN Act, President Trump’s support of the rare disease community and how we can continue to push for more reforms to benefit the 1 in 10 Americans with a rare disease.

In January, I took a study break to meet former federal judge Ashley Moody, who is running for Attorney General of Florida.

It’s been a busy few months, and now I am back to work, focusing on reforming healthcare regulations and proposing legislation to assist patients and industry meet the end goal of getting treatments to market.

 

 

The Truth About OPEN Act

I was blessed to be with Congressman Bilirakis this week, working on the OPEN Act.

Since the end of last year when the OPEN Act was removed from the 21st Century Cures bill, I have spent many sleepless nights trying to understand why Washington was not comprehending the critical need for repurposing drugs. We are now working to convince Democrats that the OPEN Act is not a handout for pharmaceutical companies, as I am living proof that repurposing an FDA approved drug works wonders. Continue reading

Mr. Trump, We Need Your Help!

Mr. Trump, I’m writing this in the wake of the Republican National Convention. I was so excited to see your son Eric acknowledge the special needs community. See, before I ever became “Rare Candace”, I was the sister to an incredible young man with autism and cerebral palsy. Growing up, I was his sister, his protector and his best friend. One day, I will be his caretaker all while managing my rare disease and three additional chronic conditions.

I am not looking for sympathy or money, I believe I have been blessed with a second chance that few others in my position will ever have. I am about six weeks away from my 30th birthday, a day I am not suppose to see because my rare disease almost stole it from me.

In the two years I have been sick, I have become a voice for the members of society hidden away from plain view. I am a voice for the caretakers, the siblings. The people in hospitals and at home fighting for a “new normal” with illness. I have been working with members of Congress in both parties to pass legislation that will help the largest minority in America- people with disabilities.

My rare disease does not define me, just as my brother’s conditions do not define him. He graduated with a degree from Florida Atlantic University, despite my parents being told he would never walk or talk. I was hospitalized with a platelet count so low, when I hit my head on a 26 foot box truck at work the day before, I should have bled to death. We both have defied the odds. Your children spoke to us, as did you. So I am reaching out.

I know we can do better for America. I know our orphan drug approval process is overcomplicated and leaves people to die from awful diseases while we approve other drugs that carry little benefit to the American public. I am the victim of Obamacare, which I have to pay through my law school loans, yet covers little while I manage my health. We can fix this, and I know you can help.

Mr. Trump, over 30 million Americans have a rare disease. Factor in caregivers and families members, that number grows to well above 100 million. We need your help to change the way this country assists people like me and people like my brother. I see the things that need to be changed, things that can be improved, and in your speech you touched on many of them.

I would like to talk to you about how we can work towards Making America Great Again by increasing funding for medical research, reforming the FDA and encouraging biotechnology and pharmaceutical companies to create new treatments and potential cures for the over 7,000 known rare diseases. Currently, only 5% of those disease have an FDA approved treatment. America can do better, and with you we can reach new heights.

Candace H. Lerman

 

The Struggle of Being Disabled in Law School

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Discrimination and bullying of disabled students is rampant in colleges and universities. Now that I have a full year of law school under my belt since being diagnosed with a rare disease and three other chronic conditions, I connect with those who have had similar experiences. I refuse to be silent about “administrators” who torment students with invisible disabilities because they are ignorant. It is obvious that they disregard the Americans With Disabilities Act and university policies with their outrageous and targeted discriminatory behavior. It is an epidemic for the largest minority in the United States. Continue reading

Industry: Friend, Not Foe

There has been a great deal of criticism of pharmaceutical and biotechnology companies in recent months. Most of the anger surrounds drug pricing, and many in the rare disease community have participated. While affordable healthcare is a priority and we need access, an even more alarming need is actually treatments for orphan disorders. Many rare disease patients are struggling day to day, without anything to help them manage their symptoms and conditions. Drugs for small populations cost money, the FDA is particularly critical of rare disease drugs making investments risky and the cost of treatments sky rocket. Continue reading

I’m Not Sorry, I Hate My Body

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It is no secret that since I became sick and was stuck on prednisone for months that I began to hate my body. After all, I’m up about 30 pounds from where I was nearly two years ago and I lost a lot of muscle that I had worked so hard to gain. I never acknowledged to myself how much I hate my body until I was out for a walk tonight. My hatred isn’t just for the weight gain or loss of muscle. It comes from a feeling of betrayal: my body tried to kill me. My immune system malfunctioned and for some miraculous reason, I survived months of physically challenging work in heels without internally bleeding to death.

Continue reading