#teamdebra

On October 11, seven dedicated #TEAMDEBRA runners will be joining 44,000 athletes from across the globe for the Bank of America Chicago Marathon! The 26.2-mile course through 29 of Chicago’s scenic neighborhoods is one of the six World Marathon Majors.  

debra of America is grateful to our TEAM DEBRA runners who train hard to raise awareness and funds to support and represent the EB Community. Joining this year’s team is Steve and Michele of Roswell, GA who are running in support of Ellie Tavani, a young girl who lives with Recessive Dystrophic EB.  

To support TEAM DEBRA’s fundraising efforts, please click here. 

Although the deadline to register for the Chicago Marathon has passed, you can join TEAM DEBRA for the NYC Marathon and Flying Pig Marathon. Please email [email protected] for more information.

1. Have you both run other races before? If so, what ones?  

We “ran” a 5k back in 2013 for a friend’s charity, but we walked more than ran it.

2. This is your first marathon! How are you feeling about running in October?  

MANY feelings come to mind: anxiety, excitement, fear, shock, denial, accomplished.

3. What inspired you to run the Chicago Marathon with TEAM DEBRA?  

[Chair of debra of America’s Board of Directors] Andrew Tavani is Steve’s best friend since childhood and Michele’s sister Tracy married Andrew’s brother Gregg, so we are extended family. We’ve watch Ellie Tavani grow up to become the smart, beautiful teenager she is, but have witnessed her daily struggles with this chronic disease. Not realizing it could ever become a reality, we naively signed up to help support finding a cure for debra of America.

4. Have you started training? If so, how has your experience been so far, especially given the pandemic?  

Luckily, the Tavani clan guided us towards the Jeff Galloway run program which is the run/walk interval training. In January, we started with the Dunwoody Galloway marathon training group to help gain our endurance since we were starting from scratch with running. It was hard to get up so early on a Sunday morning in COLD weather, but we’ve met amazing people and learned so much about pace, fueling and formed lasting friendships. 

In April, we switched to the full marathon training group in metro Atlanta- with current COVID restrictions, we are doing Zoom calls only but hope to meet up and run together in our small groups soon. We both will need the in-person support during the upcoming long mileage runs.

5. In your opinion, why is it important to raise awareness and funds for the EB Community?  

When we tell our fundraising story about Ellie, many are not aware of this disease, but they see how painful living with it can be. The world needs more awareness so it can find a cure faster.

6. What are you most looking forward to on Race Day?  

CROSSING THAT FINISH LINE but also feeling the energy of the crowd. People we tell about running our first marathon say, “oh you can check that box off on your bucket list” but it was NEVER on our bucket list before, wow have things changed. We also call ourselves runners too (minds blown).

A huge thank you to Steve and Michele for raising funds and awareness in support of the EB Community! You can support their efforts by making a donation here.

Many of our supporters and EB Community members may know Bethany as debra of America’s Programs & Development Associate. She ensures that our Programs & Services are running smoothly for those in need! She’s also the captain of #TEAMDEBRA, motivating our dedicated athletes to train hard in support of the EB Community.  

However, this October, Bethany will be stepping out from behind-the-scenes and joining her teammates in the Bank of America Chicago Marathon! The 26.2-mile course through 29 of Chicago’s scenic neighborhoods is one of the six World Marathon Majors. Read on for our Q&A with Bethany where she tells us about what inspired her to run, what it’s been like training amidst the COVID-19 pandemic, and more.  

We thank all our #TEAMDEBRA athletes for their hard work & dedication and look forward to cheering them on in October!  

Although the deadline to register for the Chicago Marathon has passed, you can still join TEAM DEBRA in the TCS New York City Marathon in November. To learn more, please email [email protected].

1. Have you participated in endurance events in the past? If so, which ones?

I have done 4 half marathons in the past and a 25K, but this will be my first marathon! I ran the Rock ‘n’ Roll Brooklyn Half in 2017 and the United Airlines NYC Half in 2019 for TEAM DEBRA and have done a few others on my own.

2. As our Programs & Development Associate, as well as TEAM DEBRA's captain, you usually work behind-the-scenes for the team. How does it feel participating in another race with TEAM DEBRA?  

It certainly feels strange at times. I like participating in races for TEAM DEBRA not just for the physical benefits, but also because it gives me a good perspective of what support our TEAM DEBRA runners need from me. It is also a great way to get to know many of our runners because I connect with them on group runs, pre-race dinners, and other events we put on leading up to race day.

3. What inspired you to run the Chicago Marathon?

It is hard to manage marathons without feeling inspired by the runners and the event themselves. And as someone who runs half marathons, doing a marathon is the next big step. I was excited for the challenge and being from Michigan, the Chicago Marathon is close to home. I had been thinking about doing one so Chicago just made sense!

4. What would you say is your favorite part of being a TEAM DEBRA member?

For me, it is so great to meet other runners who have a passion for running for charity. Everyone I meet who is a fellow TEAM DEBRA runner is inspired to run for a loved one or friend with EB. It makes the group runs and training worth it to know you are not only running for yourself, but also for the EB Community.

5. What impact, if any, has the COVID19 pandemic had on your training efforts? What have you been doing to ensure that you are marathon-ready during this unpredictable time?

I was actually signed up for a race  later this month that was canceled due to COVID19. My gym has also closed to help flatten the curve. In a lot of ways, running is one of the only options for many people as they try to stay safe. I have lost some of my other workouts that I do to keep fit, but for now I have found a few great home workouts! I’m trying out Yoga (shout out to Yoga with Adrienne on YouTube) and a few other things in addition to running. Plus, the weather has been nice in my area so running outside (while keeping 6 feet away from other people) has actually been a lot of fun!

6. What are some goals that you have for TEAM DEBRA as a whole?

I always want to get more people involved. With races like the Chicago Marathon it is hard to get people to commit to running 26.2 miles. But we do have other events like the TD Five Boro Bike Tour in NYC and Cincinnati Flying Pig Marathon Weekend that people of all fitness levels can participate in. If people have a passion for finding a cure for EB, they can find a TEAM DEBRA event for them.

7. What are you most looking forward to on race day?

This might sound a bit funny, but I am most excited to cross that finish line. I know at that point, no matter how well I train ahead of time, I will be well past the point of exhaustion and I will be in a bit of shock that I did it. I know it will be an amazing feeling and I can’t wait!

8. Are there any other races that you look forward to participating in as part of TEAM DEBRA?

On October 11, seven dedicated #TEAMDEBRA runners will be joining 44,000 athletes from across the globe for the Bank of America Chicago Marathon! The 26.2-mile course through 29 of Chicago’s scenic neighborhoods is one of the six World Marathon Majors. But what makes the Chicago Marathon extra special is the spirit of its spectators and the celebratory atmosphere of the event!

debra of America is grateful to our TEAM DEBRA runners who train hard to raise awareness and funds to support and represent the EB Community. Joining this year’s team is Stephanie Tavani who is running in honor of her niece, Ellie, who lives with RDEB. Get to know Stephanie below.

Although the deadline to register for the Chicago Marathon has passed, you can join TEAM DEBRA in other races, including the NYC Marathon, the NYC Half, Flying Pig Marathon, and Five Boro Bike Tour. Please email [email protected] for more information.

1. Have you participated in endurance events in the past?

The Tavanis (brothers Andrew, Gregg, Michael and Michael’s wife, Stephanie) have run many New York Marathons in support of EB. Most recently, we ran the 2018 NYC Marathon. Before that, we ran the 2011 & 2014 NYC Marathons and a couple of us also ran the 2013 NYC Marathon.

We have had great experiences each time, but the 2018 marathon was our best yet! It was a beautiful day, we got to start with the pro athletes (another story there 😉) and all felt great during the run.

2. What inspired you to run the Chicago Marathon with TEAM DEBRA?

We (especially me) was ready to run a marathon other than NY. I’ve always wanted to run Chicago and running for TEAM DEBRA was a great way to guarantee our entry! Michael ran it back in 2006.

3. Have you started training? If so, how has your experience been so far?

We like to train for 4 months, so we will start in June. We will train the same as we have in the past. Usually 2 shorter runs a week with a long run on the weekend. 

4. In your opinion, why is it important to raise awareness and funds for the EB Community?

Ellie, Andrew’s daughter & our niece was born with EB. She is 13 years old now and raising awareness and funds for this horrible disease has been close to our hearts since the day she was born. 

5. What are you most looking forward to on Race Day?

Race day is an exciting day because all your training leads up to the actual race. We have found that all  the training runs we do together are also a big part of the overall experience. 

Thank you to Stephanie for raising funds and awareness in support of the EB Community! You can support her efforts by making a donation here.

This November, fourteen #TEAMDEBRA runners will be joining thousands from across the globe to race through the 5 boroughs of the Big Apple. With over 50,000 runners and participants from over 125 countries, the TCS New York City Marathon is the largest marathon in the world!

debra of America is grateful to our dedicated TEAM DEBRA runners who train long and hard to raise awareness and funds to support those with Epidermolysis Bullosa (EB) in the United States. Joining this year’s team is Ethan Cempe who is running in honor of his wife, Rebekah, who lives with EB Simplex. Get to know Ethan below.

1. What inspired you to run the NYC Full Marathon with TEAM DEBRA?

Ever since I began running marathons, I have had my eyes set on the New York City Marathon. The idea of running through the five boroughs sounded incredible to me. More specifically, I decided to take on the challenge and join TEAM DEBRA to support all those living with EB, and in honor of my wife who has EBS. Seeing the daily struggle that this disease causes and how there is very little public knowledge of it inspired me to run for those with it and use the race and training to bring much-needed awareness to the disease.

2. How has your training experience been so far?

Training so far has been incredible. Throughout training, I have recorded videos on runs, conducted interviews with people with EB, and talked to people at local races about the run and the disease. Running has always been a release for me, a moment in my day to relax and re-focus. Because I am running for this charity, I have taken my runs in a different direction. My motivation through my runs is those I am running for. That’s not to say that it isn’t sometimes very hard. I have had many mornings that waking up before the sun comes up to put in the miles is the last thing I want to do or had those long runs where I don’t think I can take another step because it is too hot or I am too tired. But I continue to remember who I am running for and the joy for the run comes back!

3. In your opinion, why is it important to raise awareness and funds for the EB Community?

I have spoken to many people in recent months about EB and many didn’t even know the disease existed, even people in the skincare business. Seeing how my wife struggles day to day with caring for her EB and how other people without EB give her “suggestions” and “tips” on how to “care for it” makes educating the general public all that more important. Finding a cure to this terrible disease is vitally important to the lives of those with it and educating the public is the first step to funding. 

4. Has there been anything new that you’ve learned about EB, the community, training, or yourself as you train for the big race?

I have learned so much about EB since the start of training. I learned about how much research has advanced the knowledge of EB even in just the last few years. I didn’t know the extent of what debra does for families in need. Running for a charity is such a fulfilling thing to do. Even though I love running on my own, being able to dedicate all my runs to those people I am running for and bring awareness to the disease is an incredible experience.

5. What are you most looking forward to on Race Day?

I always love the energy of a marathon so I am looking forward to the excitement that the marathon will bring. NYC, being one of the world’s major marathons, I’m sure will have some incredible energy and excitement, and who can resist the opportunity to run through the streets of the Big Apple! Incredible!

A big thank you to Ethan for his amazing efforts to raise funds and awareness! Support his efforts by donating to his personal fundraising page here. 

Follow Ethan’s training journey on Instagram here.

We are thrilled to announce that debra of America is an Official Charity Partner for the 2017 United Airlines NYC Half-Marathon! The United Airlines NYC Half will take runners from around the city and the globe on a 13.1-mile tour of New York City. Joining those runners will be Ashleigh Kaufman, an EB advocate & a new member of TEAM DEBRA! 

TEAM DEBRA brings athletes together to spread EB awareness and raise funds to find a cure and treatment for EB. 

We spoke to Ashleigh about her love for running and EB awareness efforts. Check out our Q&A with Ashleigh below! 

Tell us a little about yourself.

Hi there! My name is Ashleigh Kaufman, born and raised in Boston, University of New Hampshire Alumni, and currently living in Atlanta. I am 24 years old and I have practically lived my entire life in running sneakers. Running is a bigger part of my life than I ever imagined. It helps me relieve stress from my work life in a startup (Email Marketing Manager at DataClover), all the way to dealing with my personal struggle with anxiety. My passions include my family, my health, traveling, french bulldogs, New England sports, and the outdoors.

How did you learn about debra of America?

For this question, I’d like to share my mother, Robin Kaufman's story, in her words:

I had dozens of appointments with dermatology and hematology for over a decade, but the test results never led to a diagnosis. I was 47 when I was enjoying a microdermabrasion facial. However, at the end of the treatment, my face was streaked and bruised. It looked terrible. At the end of the facial, they had to put medical-grade make-up on my face. As time went on, the bruising/bullosa symptoms were happening more frequently in addition to skin tears. After several bouts of skin tears, a plastic surgeon at BWH, in conjunction with two dermatopathologists one from the BWH and the other the Chief at MGH discussed my case and thought it prudent to have genetic testing be done.  When I was 57, I received confirmation that my results were positive for EB. 

I learned of debra of America during a conference at work (Brigham & Women’s Hospital in Boston, MA). The topic pertained to pressure ulcers. There was a representative who was giving a demonstration for Mölnlycke products and how they would be the gold standard of care to prevent pressure ulcers. However, at the end of the lecture, I went up to him and introduced myself. I shared with him my diagnosis of EB. He, in fact, mentioned, that I would benefit from the use of some of the products when my skin tears and blisters arise. His name is Jim Dunne. He is the Northeast territory sales manager for Molyncke, as well as an angel from heaven! Jim told me about debra of America. From there I did a more research about debra. When I had a tremendous need for dressings, I turned to debra as the expense was rather significant. I spoke with Jeanette Gissen and she made arrangements for me to receive the needed supplies, some of which were denied by Blue Cross. Attorney Joe Murray is currently working on some other areas of denial and how they relate to Blue Cross.

The hardest struggle associated with EB is my inability to be as physical and carefree as I once was.  I have been practicing cognitive behavioral therapy to help me through each crisis/ incident. My loving children and husband make me feel that I can do anything!!!!

What does EB mean to you and your family?

The hardest part of watching my mother live her everyday life #EBaware is knowing there currently is no cure. We are very thankful that she is still able to live her life daily and fight this battle which many do not understand. My dad has been her rock throughout this all, he has been there for every blister/ulcer assisting her with bandages, comfort, and love. Those who are not educated about this disease do not understand why she has these marks and is fragile. It took me a while to fully understand EB myself. I want my mother, Robin, and those who struggle daily with EB to know that: you are still beautiful and strong spread your wings and knowledge and let us raise awareness together to find the cure.

What inspired you to run for TEAM DEBRA in the 2017 United Airline NYC Half?

My mother is my whole world. She has raised me as the strong woman I am today. This is the opportunity for my brother, Jonathan, and potentially my dad, who is currently training, to show her that we will always fight for her. She does not stand alone in this battle of Epidermolysis Bullosa.

Why is it important to raise EB awareness?

A cure for EB means no child or adult will have to suffer from this devastating illness. Spreading awareness and improving the quality of life for those who suffer is my goal.

Are you a life-long runner or are you training for your first Half? How has the training experience been for you?

I have always been a runner. I was a distance runner at Milford High School competing in the 2 mile, 1 mile, 800m, 4x400 relay, 4x600 relay, 4x800 relay. My coach Lorraine Brogioli was incredible. I was also a soccer player participating in club soccer for my school. Today, running guides me along my journey of life where I can celebrate the ups and downs.

What excites you most about running for TEAM DEBRA?

RAISING AWARENESS. Friends, family, and all need to understand that those living with EB want and need a cure.

A BIG thank you to Ashleigh and her family for their incredible support! To join Ashleigh and other TEAM DEBRA runners from around the country, please email: [email protected]