Unsung Heroes

November was National Family Caregivers month. Which means, of course, that I waited until December to talk about it! But better late than never. It’s an important topic.

The premise of the month is to celebrate those who care for loved ones in need of daily help. The person may be aging, disabled, or some combination of the two.

It is so great that there is a month dedicated to caregivers. They are deserving of the recongition, as caregiving truly is a sacrifice of time, energy, and emotion. When you hear of someone living with a disease or disability, people often think of the person living it. But it has an impact on everyone, including friends and family. Especially family.

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Happy Thanksgiving!

Hi everyone!

I just want to wish a happy and relaxing Thanksgiving to you and your family. Unless you are in charge of the food or despise your in-laws. In that case, my condolences.

I’ve had some writer’s block recently, but figured I’d write a quick post and provide a few links and updates:

  • My travels have officially wound down for the year. In 2019, I attended conferences in Orlando, Philadelphia, Chicago, Boston and two in Washington, DC. We drove to all of them! Which ties in well with why I was in DC. In October, I spent 2 weeks in DC attending both the MDA Public Policy and Advocacy Confernce and the NORD Rare Summit. The MDA conference was all about policy, and one of the issues we discussed at length was air travel accessibility (or lack thereof). I wrote about my experience at the MDA conference here.
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Ah yes, I signed a photo release form. Fortunatley, this was a good picture!
  • Recently, I was profiled on the American Neuromuscular Foundation’s website. Also got the chance to shamelessly plug the work of my friend Monkol Lek.
  • Rather than write a new list of all that I’m thankful for, here is my list from last year. It is still relevant today, although this time I’d rank the socks and space heater higher. God. Then family and friends. Then warmth.
  • Speaking of lists, I have updated my list of Role Models, which was about a year out of date. I know there are many more to add, but I am about ready to take a nap and my short-term memory is MIA.
  • My friend and former boss Adrienne Harper founded an organization called Bundles of Joy (BOJ), in Westchester County, NY. They are doing great work! If you are looking for an organization to donate to this holiday season, BOJ provides essentials like diapers and clothing to vulnerable families in the area. So many families are in need of the basics, and just a little help can make such a difference in their lives.
  • This article about friendship really resonated with me. Certainly got me thinking about my own friends and how I can be a better friend.

 

Happy Thanksgiving, from the lurker.

(Seriously though – where are you supposed to hang up a giant photo of yourself?)

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A Weekend at the National Limb Girdle Muscular Dystrophy Conference

Three weeks ago (time flies!), I had the opportunity to attend the first-ever Limb-Girdle Muscular Dystrophy conference, which took place in Chicago over Labor Day weekend. Although everyone who attended the conference had to contend with the logistical challenges of traveling over a holiday weekend, it was well worth the frustration and hassle.

This was an opportunity too good to pass up.

The idea of having a conference for all limb-girdle patients, regardless of one’s subtype, is not a new one. There are Facebook groups with thousands of members where limb-girdle patients of all subtypes communicate with one another and share advice and experiences. Many are good friends, but have never had the chance to meet in person. Until this year, there has never been an opportunity to bring all these different patients together, under one roof, for any length of time.

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A Sense of Urgency

I reached a personal goal the other day! I finished writing the end of Part One of my memoir. (It will be a two-part book).

Only downside? My goal was to get this far by September….2018. Oops.

I am on schedule, give or take a year. Ok, ok, so it happened a little slower than I had hoped, but I had a perfectly good reason for falling off. I was busy! Busy with my job, attending conferences, going to doctor’s appointments, buying a new wheelchair, fighting insurance, getting my septum un-deviated. Although mostly it was the job. It’s a lot of work, but I enjoy what I am doing so I have no complaints there. It’s just that at the end of the day, I am usually too fried to want to write.

In the last few months, I have maximized my down time on weekends to catch up on writing. This has worked out much better than trying to write at night during the week. I am more productive writing in two days than I would have been if I forced myself to write a few hundred words each day.

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Boston

As I write this, I am back home in comfortable, quiet Connecticut. But my mind is elsewhere.

Recently, I had the opportunity to spend two weeks in Boston, my adopted home for 12 of my 32 years. To say that I was excited to visit the city for an extended period of time is an understatement. I was thrilled.

My years in Boston, from 2004-2016, were the most eventful years of my life. They formed me into who I am today.

Boston was where I went to college, worked for six years, and got my MBA.

It was where I first noticed symptoms of the muscle disease that would take over my life.

It was where I made lifelong friends and lost a dear friend.

It was where I fell many, many times.

It was where I questioned my very existence and the point of this frustrating, maddening hand I was dealt.

Most important, it was where I learned to pick up the pieces of my life and start over again.

Boston is where I grew up.

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The 2019 Ralph and Theresa Anselmo Resilience Award

Hi everyone,

Thank you so much to everyone who donated last year to the first-ever Ralph and Theresa Anselmo Resilience Award. The response was overwhelming! I had hoped to fund one award and raised enough to fund two. I am so grateful for everyone’s support. It means so much to my family and I.

If you would like to learn more about last year’s recipients, Hannah and Katherine, Northeastern did a great job sharing their stories:

https://news.northeastern.edu/2018/12/10/heres-what-one-northeastern-graduate-is-doing-to-help-students-handle-their-medical-expenses/
I am happy to announce that the award is coming back for Year 2! Here is a link to the GoFundMe page: https://www.gofundme.com/f/2019-anselmo-family-award

This year my goal is to fund two $1,000 awards for students registered with the Northeastern University Disability Resource Center. Any amount of support would be greatly appreciated, even if it’s just sharing the GoFundMe link.

I ended up raising over $2,800 last year, and the remaining $800 will be allocated towards this year’s awards. If I raise more than my goal, I will allocate it towards next year. Either way, your donation will be put to good use!

With your support, we have already been able to positively impact the lives of two students. I hope to make this an annual award that can help students for years to come!

For those learning about the award for the first time, here is the description:

The Ralph and Theresa Anselmo Resilience Award is an award that I have created at Northeastern University (my alma mater) in honor of my parents, Ralph and Terry.

The goal of this annual award is to provide monetary assistance to a student (or students) registered with Northeastern’s Disability Resource Center  (DRC). Although when I attended Northeastern I did not experience any of the symptoms of the muscle disease that I am living with today, it is a resource I would have used had the timing been different. I have met a handful of students registered with the DRC over the years, and they are some of the kindest, most driven students I have ever met.

As someone living with a progressive disability, I have benefitted from the support of others who have enabled me to achieve my goals and dreams, which included going back to school full-time to get my MBA. Many people have helped me along this journey, none more so than my parents.

My mom and dad have been instrumental in empowering me to succeed, even as my physical condition has deteriorated. They provide me assistance and support without ever asking for anything in return. My resilience today in facing my disease would not be possible without their help.

In the spirit of the example set by my parents, I want to help others achieve their goals and dreams. Specifically, I want to help Northeastern students registered with the DRC. The intent of the award is to provide a little more peace of mind to the recipient, whether it’s helping to purchase a piece of adaptive equipment they may need for the classroom, or putting the award towards books or room and board. How they decide to use the funds is at their discretion.

I am a firm believer that anyone of any ability level can do anything they set their mind to. However, we are only as successful, we are only as strong, as our support system around us.

Without my parents, I wouldn’t be where I am today. It is an honor to name this award after them!

Award Parameters:

It is a one-time award of $1,000 each for two students. Any funds raised above and beyond the goal will go towards future awards. I will keep everyone up to date on how the funds are allocated.

Eligibility:

–          Any Northeastern sophomore, middler or junior year student with a GPA above 2.0.

–          Must be registered with the Disability Resource Center.

–          Student must provide a statement of what they plan to do with the award and why it will help them on their college journey.

How the funds can be used:

–          The award can be used on anything school-related, such as: tuition, an assistive technology device, books or room and board.

I will follow up once the award has been announced. Thank you in advance to everyone for your support!

 

 

Road Trip, Part 1

Oh, hi there!

Yes, yes, I know. I haven’t written in a while. I am well aware. I guess you can say I’ve had a bit of writer’s block recently, and with the MDA Clinical & Scientific conference fast approaching, I also had a handy excuse not to write for a few weeks.

Which is a good thing, because the conference, and the road trip to Orlando, gave me a lot to write about.

Although I wasn’t technically on the road each day, I was away from home for three weeks, which seemed like an eternity. That is a long time to go without my adjustable bed.

But all in all, it was worth it. I had a great time at the conference, and also had a chance to see my sister and her family for a few days, which made the aches and pains of a long car trip bearable.

Rather than write a long narrative, I feel like making a list instead. I like lists. Most importantly, it’s easier to insert GIFs into a list.

This particular list is not ranked in any order. Instead, it’s 18 thoughts to commemorate the 18 days I was away from home. At least, that’s what I counted on the calendar. If it turns out to be more or less, too late.

This post is broken up into two parts. Even in list form, I can’t help but write thousands of words.

Continue reading “Road Trip, Part 1”