Hi everyone!
I just wanted to let you know about an upcoming panel that I will be on to commemorate World Rare Disease Day. The WEGO Health Patient Panel is taking place on Friday, February 26th (tomorrow) at 12pm Eastern.
I will be joined by two other patient leaders in the rare disease space, Guadalupe Hayes-Mota and Lindsey Kizer.
If you would like to register, click here.
Hope to see you there!
Chris
Although Rare Disease Day (Feb. 29th) has come and gone, the afterglow remains. It is one of my favorite days of the year now, right up there with Christmas, Easter, my birthday, and any day when I have a fantasy baseball draft.
I always try to attend or take part in a Rare Disease Day event when possible. This year, I had the honor of participating on a panel with my fellow rare disease advocates at MassBio’s Rare Disease Day celebration on Friday, February 28th.
It was a whirlwind of a day, but tremendously gratifying. To be in a room full of rare disease advocates, family members, state representatives, industry and nonprofit leaders, and other stakeholders was an empowering experience. We represented dozens of different diseases, but shared one purpose: to celebrate those living with a rare disease and to raise awareness for the thousands of diseases that often are forgotten and overlooked.
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.
Today is one of my favorite days of the year: Rare Disease Day. Held annually on the last day of February, it is a day to celebrate those living with rare diseases, and also to raise awareness for the many different types of rare diseases that exist in the world. And there are many.
I consider it to be one of my favorite days, not because I enjoy having a rare disease (let’s be serious!) but because it brings out all the wonderful feelings that make life so meaningful – love, community, passion – just to name a few. What you won’t find, however, is pity – just the opposite, in fact. Rare disease patients don’t want you to feel sorry for them, just to understand what it’s like to walk a mile in their shoes.
Today I had the pleasure of appearing on WTNH’s Good Morning Connecticut, which is Ch. 8 here in the state. It was a great opportunity to raise awareness for Rare Disease Day, which is taking place this year on February 28th, and also to talk about my personal experience with a rare disease. I always enjoy opportunities like this to break out of my shell and reach new audiences. Many thanks to Quinnipiac and Ch. 8 for setting this up!
Today I am featured on the WebMD website for Rare Disease Day! It is very exciting. I was interviewed a few weeks back (many thanks to NORD for connecting me) for a series they are running about patients living with a rare disease.
The interview gave a brief overview of my condition, my patient journey, and advice I’d give to others who are newly diagnosed with an adult-onset disease. I always enjoy being able to use my story to raise awareness and offer advice to new audiences.
You can find a link to the interview here.
Today, February 28th, is Rare Disease Day around the world. Celebrated annually on the last day of February, it is a day to celebrate the millions of individuals living with rare disorders who persevere and thrive against tremendous odds. The truth is, many of these diseases (there are over 6,000) are so rare, no one has ever heard of them, including doctors and those who work in the life sciences industry. Consequently, rare diseases get virtually no research funding when compared to the more common diseases that affect millions of people. Even with government incentives the funding gap is astronomical. Worse, some rare diseases have so few patients worldwide that it is nearly impossible to organize a foundation, raise money, and offer support and resources. This only magnifies an already frustrating situation.
That’s what makes Rare Disease Day so important. It is a day where all rare disease patients, collectively, come together as one community. It provides a platform to impart on lawmakers, scientists, and the general public how important it is to support rare disease research, and to raise awareness for some of these conditions. Around the world, ceremonies take place in civic spaces and government buildings, allowing for a diverse set of stakeholders to see firsthand the human impact of living with a rare disease.
I was honored to be part of the festivities last Rare Disease Day at the Massachusetts State House in Boston. I was invited by MassBio to be a patient speaker in the celebration, and gave a short speech in front of over 400 people. It was both thrilling and therapeutic. I met many wonderful patients with other rare diseases, along with advocates and scientists committed to finding treatments and cures. Several people had never heard of my condition (Miyoshi Myopathy), so it was also a great opportunity to educate.
This year I will be working, so I will not be able to make it to my local ceremony in Hartford. However, my thoughts will be with those who will share their patient stories and captivate audiences around the world.
On this day, our collective disorders are not so isolating. It is hard to put into words how much that means.
What a day.
Last Monday – February 29th – was Rare Disease Day around the world. The day exists to raise awareness about rare diseases and the urgent need for increased funding in order to bring about treatments. Just as important, the day celebrates patients like myself who are living with a rare disease, and helps to reinforce how we are part of a much larger community. According to Global Genes, there are approximately 350 million people around the world living with a rare disease, which shows that collectively, we are anything but rare!
I had the honor of speaking at the Massachusetts State House as part of their ceremony to commemorate Rare Disease Day. I was actually supposed to speak at this event last year, but, as I’m sure you all remember so fondly, it was a terrible, terrible winter. I simply could not make it downtown with all the snow on the ground. Fortunately I was invited back this year, and I gladly accepted. Even better, there was no snow to be found.
I had not been to the State House in many years, and had never been in the Great Room – a large, open room on the second floor with high ceilings and natural light shining through the roof. It was 65 and sunny out, so there was plenty of sunshine in the room, which set the mood for the uplifting ceremony.
I was the third of four patients to speak, after opening remarks from the emcee and a state representative. There were over 450 people registered for the event, and almost all of them showed up, as all the seats were full and the back area was standing-room only.
When I got up on stage I was a little nervous, but then I calmed down and started talking. I reminded myself that I had given this talk many times before. I could have used notes but decided not to. For some reason I am more comfortable when I memorize what I am going to say rather than referring to notes as signposts. Every time I watch a speaker look at notes I get distracted, so I try to not be that person, even though it is perfectly ok.
My speech turned out well, although I always feel like I can do better. I am a bit of a perfectionist. Afterwards, I was approached by several people in the audience who enjoyed hearing me speak, and wanted to connect after the event. Perfect speech or not, this why I do it. I enjoy using my story to help inspire others and to open new doors for myself that would not have opened otherwise.
The only downside to the day was that it was exhausting; I just don’t have a lot of energy anymore. I tired out quickly from standing and talking to people, then sitting down for long periods of time, then alternating sitting and standing as the photographer took pictures. I got home afterwards and took a nap, and ended up missing class.
Nonetheless, it was an exhilarating day. In addition to speaking, I also had an article published on STAT, which has been a goal of mine since it launched late last year. STAT is a life sciences website owned and operated by the Boston Globe. I am one of the first patients to be featured on the site, which is quite exciting. Hopefully there will be more opportunities for me to write for them in the future.
I heard from people from all parts of my life who liked and commented on the article, and who wished me well as I spoke at the ceremony. All in all, this was a day and an experience that I will never forget.
Here are some links to the pictures that were taken at the ceremony:
https://www.massbio.org/events/signature-events/rare-disease-day-43537
https://www.facebook.com/media/set/?set=a.10154569351133448.1073741930.377893583447&type=3
One of the greatest benefits of business school, besides the education of course, has been my evolution as a public speaker. When I started the program almost a year and a half ago, I was terrified to stand in front of an audience. I was fearful that my voice would crack out of nervousness or my mind would go completely blank. It also doesn’t help that I can’t stand for long periods of time anymore. My first presentation in school went about as awful as you’d expect – my mind went blank and I had to read word for word off the slide. It was painful to watch.
Thankfully, for both the audience and for myself, things have changed dramatically. I not only have improved my presentation skills, but I also have caught the speaking bug. Although I still get nervous and would rather not present on business topics, I can hold my own in front of my classmates. Part of my improvement has been due to public speaking classes I’ve taken at school. I’ve learned techniques and tips that have been extremely helpful in structuring my presentation and in controlling my body language.
However, the greatest reason for my success has been outside of the classroom. The opportunities I have had to share my patient story is what has truly gotten me over “the hump”. I am at my most confident when I am sharing my story with others, and talking about my journey, specifically what it’s like to go from ability to disability. After all, who isn’t comfortable talking about themselves?
I mean that jokingly of course. The answer is me. I am not naturally someone who likes to be the center of attention, under a spotlight both literally and figuratively. The first time I spoke about my condition in front of an audience, I thought I was going to have a panic attack and throw up on stage. Now though, I can recite my story almost without thinking. What I realized is that my journey these last eight years is so ingrained in my soul that it is part of who I am. There is no memorization required; I just have to tell it like it is.
Over the last three years I have had wonderful opportunities to speak and share my story in front of various audiences. In April 2013 I was invited to the Jain Foundation conference in Washington D.C., where I talked about my experience with the disease and my participation in the clinical outcome study sponsored by the foundation. Thankfully I didn’t throw up on stage, especially since it was videotaped!
A year and a half later, in November 2014, I told my patient story at a fundraiser I helped organize called Strength, Science and Stories of Inspiration. That night was when I realized I was onto something special. There had to have been 200 people in the audience, including friends and my parents. Although nervous, I had control of the room from the start and it was a great success. More importantly, it made me realize that not only was it not that hard to share my story, but that my story was having an impact on people.
That belief was solidified a few weeks later, when I gave an “Eagle Talk” – the BC MBA program’s version of a TED talk. In front of 50-60 classmates and professors, I gave a 25-minute presentation that was extremely well-received. The talk also had the added benefit of finally putting me at ease with my classmates. I had been looking for a way to tell my friends what it was like to walk in my shoes, since this was the first time I had met a new group of people while disabled. Everyone else I knew – family, friends and coworkers – saw me transition from ability to disability. They knew me when I could run and climb stairs, only to see me weaken before their eyes over the next few years. This talk helped to put my life before business school into context for my new group of friends. I wanted them to know I was not always this way, but that I am also not ashamed of who I am.
I not only find it exhilarating to inspire an audience, I also like being able to tell my story on my own terms. When I speak, there is no editor, no filter between what I want to say and what is actually said. It is not written on paper for people to interpret or misinterpret. My story comes right from the source, and the audience can see the emotion and the vulnerability firsthand.
At the same time I believe, and make clear in my talks, that my story is not any more inspirational than the next person’s. I don’t have a monopoly on inspiration. There are countless people who are dealing with far worse hands and who are inspirations to me every day. Instead, I like to think of my speeches as helping to make others aware that any ordinary person has what it takes to overcome adversity and to fight through setbacks. If I can do it, anyone can. That is where I derive my greatest enjoyment, in helping others to realize this fact. I don’t share my story to have someone come away from it saying “Oh he’s so brave!“, as if it takes a great deal of courage to get up in the morning and try to live a semblance of a normal life despite my condition.
But I digress. Since that two-week stretch in November 2014, I have been looking for more opportunities to speak to a wider audience. I’ve given several presentations in class where I’ve been able to put my newfound confidence to work, but I’ve been yearning to go back to what has gotten me to this point – sharing my story and offering advice. It’s been over a year since I’ve given a talk, and I have to say I miss it a lot.
The speaking bug has also been gnawing at me this year as I search for a job. I keep asking myself, what do I really want to accomplish in my career? I realize now that whatever I do, speaking to crowds has to be a part of my life. Maybe I should be a public speaker – I’ve certainly considered it. It seemed inconceivable two years ago, but now it feels like a real possibility.
Over the past few months, in addition to class work and job hunting, I have been working hard to find opportunities to speak, which is why I am happy to say that more talks are in the works!
Without further ado, here is my schedule these next few months:
February 24th – I am so excited about this – I will be speaking to students at Northwest Catholic High School in my hometown of West Hartford, Connecticut. As part of their leadership curriculum, I will be sharing my story, and time permitting, sharing advice and the wisdom that I’ve accumulated over the last eight years. I’ve always wanted to convert my story into a talk where I can motivate and give others practical advice when dealing with adversity, and this is that opportunity!
February 29th – Five days later, I will speak at the Massachusetts State House for Rare Disease Day 2016. I was supposed to speak last year but the weather thwarted those plans. I am determined to be there this year, even if I have to sleep in the State House to do it. (On second thought, I am a bit of a germophobe so that may not be a good idea.)
March 24th – I will be on a panel at Northeastern, talking to students with disabilities about job hunting and the experience of declaring one’s disability in the job hunting process, something I have struggled with personally. I am hopeful and confident that I will be able to ease their concerns and show them that it can be done successfully, even if it is an added nuisance.
April 3rd – The third annual Strength, Science and Stories of Inspiration event will be held, location TBD. Although I will not be speaking this time (besides a short introduction), it is a great event that I hope you all can attend! More details to come once I know more….
May 29th – Still somewhat tentative, but I have been invited to speak at the Jain Foundation’s patient conference in Dallas. I’ve never been to Texas so this should be a fun time! It will be great to meet other patients with my disease. Any time you are dealing with something like a rare disease, it is imperative to meet others who are going through what you are dealing with on a daily basis. There is a level of unspoken understanding that is a huge comfort. The staff at the foundation are also wonderful people who I’ll be happy to see again!
So that’s it for now – I am open to other opportunities as they come about. As I’ve learned, oftentimes these opportunities pop up out of nowhere. It’s going to be a busy next few months, but at least it will be worthwhile. If any of them get videotaped I’ll be sure to share them!
Sidewalks and Stairwells 