Love, Undefeated

By the time you read this, you will see a completed blog post. What you didn’t see were all the drafts I deleted, trying to find the right words, only to realize that the right words don’t exist.

Although the Red Sox won the World Series Sunday night, which brought me a profound sense of joy and elation, on the whole it has been a difficult last few days.

What happened in Pittsburgh on Saturday has affected me deeply. Not that the other recent tragedies we have faced as a nation are less disturbing or sad, it’s just that this one struck close to home. Although I am not Jewish, the pain I feel for their community is significant and raw.

To think that such carnage could take place at a house of worship has shaken me to the core. Those who attended the Tree of Life synagogue last Saturday were there out of a devotion to one another, and above all, to God. We may be of different faiths but I can appreciate the sense of meaning and purpose they derived from their spiritual lives.

As a Catholic, I love my faith very deeply. It sustained me through the most difficult time in my life several years ago, serving as a life preserver when I felt myself drowning in frustration and sorrow. Although I am home-bound and find it difficult to make it to church as often as I’d like, watching the mass on Sunday on my computer is the highlight of my week. To worship with a community of believers, even over the internet, fills me with gratitude.

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The Reluctant Traveler: The NORD Breakthrough Summit

On stage at the NORD Breakthrough Summit. Dr. Gupta leading the discussion on the right.

Last week, I had the exciting opportunity to speak on the opening panel at the NORD Breakthrough Summit in Washington, DC. NORD, which stands for the National Organization for Rare Disorders, is a patient advocacy organization dedicated to individuals living with rare diseases and the organizations who serve them.

The purpose of the conference was to bring together different stakeholders in the rare disease space to discuss topical issues that affect the community. The theme of the conference was “The New Era of Patient-Focused Innovation,” and my panel, titled “The Next Generation of Rare Disease Advocates”, was slated to be the keynote. I wish you could have seen my face when I found that out! It looked something like this:

As the keynote panel, we had the task of setting the tone for the entire conference. The plan was to have each of us share our personal story and how we became a rare disease advocate. Once I learned who else was on the panel, I knew we would knock it out of the park. I was thrilled to take the stage with such a distinguished group, and even more thrilled that I still qualified as “the next generation”.

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The Next Chapter

When I started business school in 2014, I knew that upon graduation I wanted to work either for a nonprofit organization whose mission is to find a cure for muscular dystrophy or for a pharmaceutical company developing a drug that could one day help my condition. I wasn’t as worried about what function I’d perform, so long as I bought into the organization’s mission and I felt I was making a meaningful contribution. I’ve always believed that it’s better to have the wrong role at the right organization than vice versa.

It took a little longer than I had hoped, but I am happy to announce that, two-and-a-half years after graduating from Boston College with my MBA, I have found the job that I was looking for. The job that made all those nights studying for exams, all those presentations and networking events and job interviews, worth it. On August 1st, I started full-time at the Muscular Dystrophy Association (MDA) as a Market Intelligence Manager.

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Invaluable

Note: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.

About three years ago, I read a news article that I thought had changed my life. A new gene therapy clinical trial was being developed for my disease, Limb-Girdle Muscular Dystrophy Type 2B (LGMD2B). I was on cloud nine. For the first time since I started experiencing muscle weakness in 2008, I felt like there was a cure on the horizon.

Reality soon set in.

Two years later, I checked in on the progress of the clinical trial – a pilot Phase 1 trial – and saw that it was still struggling to meet its recruitment goal of three patients, even though it had been open for almost a year. I groaned. I sighed. I welled up with frustration. What had once seemed like a surefire path to a cure now seemed elusive, yet another false hope on my patient journey. Reality had sunk in – this drug discovery stuff is hard.

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Paying It Forward

Blogosphere,

I have some exciting news! I am happy to announce that I am raising money for an award at Northeastern University, my alma mater, called the Ralph and Theresa Anselmo Resilience Award, named after my parents. The award – which may end up being two awards when all is said and done – will be given to a sophomore, middler or junior-year student registered with Northeastern’s Disability Resource Center (DRC).

You can find a link to the GoFundMe page here. Any contribution is greatly appreciated! Even if you are unable to donate, sharing the link with your family and friends would mean the world to me.

At this point, you probably have a few questions:

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Test Drive

This disease likes to mess with me.

I can go from months where I don’t notice any change in my strength to days where it feels like I am weakening by the hour. Over the last couple months, another wave of weakness has infiltrated my muscles, right as I was starting to adjust to my new level of strength.  I can track my decline based on the everyday activities I perform, and whether or not they are harder to do than the day before.

Lately, getting out of bed with my walker has become a chore. It requires all the upper body strength I can muster, which is not much these days. My biceps have just about shriveled away, following the lead of my triceps which dissipated a couple years back. My chest and abdominal muscles, once muscular (I’m not talking beach body, but I used to be in shape!) have been replaced by fat. I press with all my might to get up, and although I am still able to stand upright, I worry in the back of my mind about the next time. What if my arms give out or I throw out my back? It’s a long way to the floor.

There are different pieces of equipment out there to aid in the transfer and lifting process, equipment that I am going to need to entertain at some point. I also have my dad who can help me, but I can’t rely on him forever – he is going to be 70 in September and has back issues of his own. Unfortunately, every time I go through weakening fits like this, I procrastinate on getting new equipment. It is a bug in my program.

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Busy Busy

I find that weeks quickly turn to months when I procrastinate writing blog posts. It’s been over a month since my last post, but at least this time, I have a good excuse: I’ve been busy! And this excuse involves several speaking and writing opportunities, which is even better. If I’m going to temporarily neglect my blog, it better be for something worthwhile, and everything in the last month falls into that category. I figure I’d let you in on what I’ve been up to.

It’s funny – most of the opportunities in the last month popped up last minute. Although being unemployed has its downsides, this time off has at least given me flexibility, which has allowed me to say yes to things that I otherwise would have turned down.

It all started in late February. As I mentioned in my previous post, on February 22nd I had the opportunity to appear on a local morning show to promote a Rare Disease Day event taking place at Quinnipiac University. I wouldn’t call myself a TV star by any stretch (although the bar has been set pretty low these days so maybe I am?), but I felt like a natural in front of the camera. As I talked to the host, it didn’t sink in that I was being watched by eyeballs all across the state. Looking back at the video, I was impressed by how comfortable I looked, which is a major change from my demeanor even a couple years ago. I don’t mean that in a self-congratulatory way – just that I used to be realllly nervous. Like, voice-cracking-from-nerves nervous.

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