Rare Disease Blog - Cure Rare Disease | We bridge the gap between researchers and a cure® through customized medicine, by supporting families and educating the global community.

Celebrating 2 Years of the Duchenne Program at UMass Memorial

August 3, 2020

JB with his friend Jack at the UMASS clinic with Dr. Brenda Wong My son JB was diagnosed with Duchenne Muscular Dystrophy (DMD) in January of 2009 at 17 months old. I was given the diagnosis by a neurologist at…

Finding The Perfect Home For Our DMD Family’s Needs

July 27, 2020

Blog

It was almost a year to this day when we received Ned’s diagnosis. It was a heartbreaking, heart wrenching sucker punch that we could never have imagined. To say the least, there was a tectonic shift that day and my…

Dad of Steel

July 20, 2020

Blog

One of the worst days as a parent to a son with Duchenne looms over us as it is just a few short weeks away. You see, we have two boys Jonah, 16 and Emory, 13 both with Duchenne muscular…

As a DMD Mom, I Choose to Pivot

July 13, 2020

Blog

Kirsten Parisi

Like most parents, I have had to pivot from our daily norm in recent months, and brainstorm ideas to keep my kids busy. Searching for new ways to keep them entertained and engaged is like my side hustle these days.…

Duchenne Tips from a Rare Disease Mom

July 10, 2020

Blog

My “quick tips” for navigating Duchenne: Find Mentors Search for someone in your own network…sometimes rare disease isn’t as rare as you think and you never know about someone who knows someone. Use social media You don’t need a large…

Introducing Our Newest Founding Ambassador: Steve Gunther

June 29, 2020

Blog

2020 is almost halfway over and what a year it has been so far. Changing jobs, starting a business, dealing with the Covid nightmare, Wishes for Drew becoming a 501(c)(3), and now selling our home! There are plenty of enjoyable…

Our COVID Change Challenge

June 26, 2020

Blog

Shop Here 43,502 ish days of quarantine has really provided me with a lot of time to think. One idea I’ve been giving thought to is what COVID has and has not changed in my life. For instance, COVID hasn’t…

An Update From Our 2019 Fellow

June 22, 2020

Blog

Keryn Woodman being awarded her fellowship by Founder and President Rich Horgan at the annual Cure Rare Disease gala, October 24, 2019. “They give them steroids and send them home.” These words were what made me decide to do my PhD…

Cheers to 14 Years: Caeden’s Birthday Blog

June 12, 2020

Blog

For the past 13 years, I have been living with Duchenne. It causes my muscles to waste away over time, so I use a power wheelchair, and I have very weak physical strength. I am entirely dependent on those around…

Mount Duchenne: Hiking a mountain we never wanted to climb

June 1, 2020

Blog

The day we received Fritz’s diagnosis, we immediately felt as if the tectonic plates below us began to shake. All of a sudden, we no longer felt like we were navigating life on a smooth, flat surface. The ground beneath…

A Successful 25 Years Despite Duchenne: Terry’s Birthday Blog

May 18, 2020

Blog

May 19th marks my 25th birthday. As someone impacted by a rare disease, I want to share my perspective to help people understand life beyond the disease. I was diagnosed with Duchenne muscular dystrophy (DMD) at three years old. Growing…

When No Progress Is Progress: A Duchenne Dad Perspective

May 11, 2020

Blog

Steve Dreher

It struck me years ago during a meeting at Gus ’school. He was in kindergarten at the time, and already having some difficulties due to his weakening muscles. He struggled to hold a pencil correctly, to cut a straight line,…

The Disability Dichotomy in a Pandemic

March 24, 2020

Blog

Kate Pecora

The past two weeks in voluntary self-quarantine have given me far too much time to think about the irony of being disabled during a pandemic. On the one hand, living with a rare disease, Spinal Muscular Atrophy, places me in…

Coronavirus? Welcome to my reality as a rare disease mom

March 16, 2020

Blog

Kirsten Parisi

By now, most everyone has felt the impact of the coronavirus (COVID-19) outbreak in their lives. From the east coast to the west coast, virtually every state in the US has cases of the virus making this a challenging time…

8 Activities People Who Use Wheelchairs Can Still Participate In

March 9, 2020

Blog

Cure Rare Disease

Rare diseases unfairly rob those impacted of far too much. Oftentimes, families are caught completely off guard at a diagnosis that can be life-changing. One of the most difficult aspects to come to terms with as a either a caregiver…

Rare Disease Day 2020: Rare Superheroes

February 28, 2020

Blog

Cure Rare Disease

For Rare Disease Day, February 29, 2020, Cure Rare Disease teamed up with young men impacted by Duchenne muscular dystrophy to transform them into superheroes. We’re here to remind them that no matter what, they are strong, they are brave,…

Silver Linings

February 25, 2020

Blog

Kirsten Parisi

Sitting in the doctor’s office, trying to understand the immensity of what is being explained to you. All your hopes and dreams about the life your children are going to have and the realization that it’s not going to be…

Defining SMA: Living a Life of Aspiration Over Inspiration

February 7, 2020

Blog

Kate Pecora

I have always had an internal pressure to be *actually impressive*. Not inspiring, not motivational. Nope, I have always wanted to be realized for talents unrelated to my physical ability – for someone to say, “Wow, that’s actually impressive.” When…

Hello, I’m a sibling and I’m here too!

January 24, 2020

Blog

Lydia Safford

When we see a family affected by disability, we usually notice the person who has a disability first. Many times in that family, there is a sibling of the one affected by disability. The thought of what a sibling goes…

In a World Unequipped for Rare Disease

January 17, 2020

Blog

Rich Horgan

Terry and his service dog, Mischief, who's always by his side to make him smile On Saturday, December 28th, my brother fell and broke both of his femurs. Broken bones are always unwelcome. But for our family, one who is…

The New Life: Losing Support From Friends After Diagnosis

January 7, 2020

Blog

Kirsten Parisi

To say I have been disappointed with people since my boys were diagnosed would be a huge understatement and I know there are many in the rare disease community that can agree. It boggles my mind how some people can…

Clinical trials – the good, the bad, and the reality

December 23, 2019

Blog

Kirsten Parisi

During this season of joy, one of the starkest reminders of the emotional rollercoaster of Duchenne is clinical trials. So, you have two children with a rare genetic disorder. You start discussing the clinical trials that you have been hearing…

A Family’s Journey: Two Sons with a Progressive Rare Genetic Disorder

December 9, 2019

Blog

Kirsten Parisi

Kirsten, her husband Mark, and their son’s Devin and Caeden. My name is Kirsten Parisi and I am the mom to two amazing boys, Caeden and Devin, who are fighting Duchenne muscular dystrophy (DMD). Our family, including my husband Mark,…

Celebrating 2 Years of the Duchenne Program at UMass Memorial

August 3, 2020

Blog

JB with his friend Jack at the UMASS clinic with Dr. Brenda Wong My son JB was diagnosed with Duchenne…

Finding The Perfect Home For Our DMD Family’s Needs

July 27, 2020

Blog

It was almost a year to this day when we received Ned’s diagnosis. It was a heartbreaking, heart wrenching sucker…

Dad of Steel

July 20, 2020

Blog

One of the worst days as a parent to a son with Duchenne looms over us as it is just…

As a DMD Mom, I Choose to Pivot

July 13, 2020

Blog

Like most parents, I have had to pivot from our daily norm in recent months, and brainstorm ideas to keep…

Duchenne Tips from a Rare Disease Mom

July 10, 2020

Blog

My “quick tips” for navigating Duchenne: Find Mentors Search for someone in your own network…sometimes rare disease isn’t as rare…

Introducing Our Newest Founding Ambassador: Steve Gunther

June 29, 2020

Blog

2020 is almost halfway over and what a year it has been so far. Changing jobs, starting a business, dealing…

Our COVID Change Challenge

June 26, 2020

Blog

Shop Here 43,502 ish days of quarantine has really provided me with a lot of time to think. One idea…

An Update From Our 2019 Fellow

June 22, 2020

Blog

Keryn Woodman being awarded her fellowship by Founder and President Rich Horgan at the annual Cure Rare Disease gala, October…

Cheers to 14 Years: Caeden’s Birthday Blog

June 12, 2020

Blog

For the past 13 years, I have been living with Duchenne. It causes my muscles to waste away over time,…

Mount Duchenne: Hiking a mountain we never wanted to climb

June 1, 2020

Blog

The day we received Fritz’s diagnosis, we immediately felt as if the tectonic plates below us began to shake. All…

A Successful 25 Years Despite Duchenne: Terry’s Birthday Blog

May 18, 2020

Blog

May 19th marks my 25th birthday. As someone impacted by a rare disease, I want to share my perspective to…

When No Progress Is Progress: A Duchenne Dad Perspective

May 11, 2020

Blog

It struck me years ago during a meeting at Gus ’school. He was in kindergarten at the time, and already…

The Disability Dichotomy in a Pandemic

March 24, 2020

Blog

The past two weeks in voluntary self-quarantine have given me far too much time to think about the irony of…

Coronavirus? Welcome to my reality as a rare disease mom

March 16, 2020

Blog

By now, most everyone has felt the impact of the coronavirus (COVID-19) outbreak in their lives. From the east coast…

8 Activities People Who Use Wheelchairs Can Still Participate In

March 9, 2020

Blog

Rare diseases unfairly rob those impacted of far too much. Oftentimes, families are caught completely off guard at a diagnosis…

Rare Disease Day 2020: Rare Superheroes

February 28, 2020

Blog

For Rare Disease Day, February 29, 2020, Cure Rare Disease teamed up with young men impacted by Duchenne muscular dystrophy…

Silver Linings

February 25, 2020

Blog

Sitting in the doctor’s office, trying to understand the immensity of what is being explained to you. All your hopes…

Defining SMA: Living a Life of Aspiration Over Inspiration

February 7, 2020

Blog

I have always had an internal pressure to be *actually impressive*. Not inspiring, not motivational. Nope, I have always wanted…

Hello, I’m a sibling and I’m here too!

January 24, 2020

Blog

When we see a family affected by disability, we usually notice the person who has a disability first. Many times…

In a World Unequipped for Rare Disease

January 17, 2020

Blog

Terry and his service dog, Mischief, who's always by his side to make him smile On Saturday, December 28th, my…

The New Life: Losing Support From Friends After Diagnosis

January 7, 2020

Blog

To say I have been disappointed with people since my boys were diagnosed would be a huge understatement and I…

Clinical trials – the good, the bad, and the reality

December 23, 2019

Blog

During this season of joy, one of the starkest reminders of the emotional rollercoaster of Duchenne is clinical trials. So,…

A Family’s Journey: Two Sons with a Progressive Rare Genetic Disorder

December 9, 2019

Blog

Kirsten, her husband Mark, and their son’s Devin and Caeden. My name is Kirsten Parisi and I am the mom…