Posts belonging to Category 'News'

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

Bringing EB Awareness to Your Community

Recently, I got involved with bringing a production of the EB-focused play "What Were We Talking About?" to my community, so I thought I would share some of my experience with others in the hopes that perhaps some of you reading this might consider hosting the play in your own hometown. And if this particular event is not something you would want to coordinate locally, maybe this blog might inspire you to launch something else in your community that feels right to you for raising local EB awareness. Every effort we make in our communities to educate others about EB and who it impacts is a step forward in greater attention being devoted to medical research, a potential increase in fundraising support of EB families and greater tolerance by others who live with EB and whose visible wounds are sometimes misunderstood and often feared by others.

I first learned about the play "What Were We Talking About?" when Gale Alexander, one of the play's authors, called me to sponsor its very first production which premiered in Wyoming. She and Linda Stoval, Gretchen Wheeler and Vickie Cawthra make up the group the Wyoming Magnolias who first brought the production to the stage. After the play was launched in both Wyoming and in New Jersey, both states of personal significance to two of the grandmothers behind the story, they wanted the play to continue its path across other cities. Gale spoke with Karen at DebRA of America about possible destinations for the play to travel next. That's when I received a phone call asking if I might be interested in bringing the play to my hometown of Louisville, KY. Gale said she would find a producer but if I could step in to head up the fundraising effort, locating sponsors and promoting ticket sales, that my collaborating with them would be a great way to help. Having worked many years on my own Butterfly Benefit event in the past, I knew I could absolutely lend a hand in that way. Plus, it had been a few years since I had coordinated a fundraiser, so I was eager to do my part to raise EB awareness and hopefully some support dollars, too, so I agreed to be part of the Louisville team to bring this special production to my community.

Emerging Artist Group founder Elizabeth Huling directed and produced the show when it was brought to Louisville. Plans were in the works for a year but didn't really move into full-throttle until January of this year. My main goal was to raise awareness for EB and we certainly had our share of scheduling challenges given there were some other events taking place on the same evening, including a major NCAA basketball game down the street at YUM Center. But we were pleased with the feedback from those who attended.

We had delicious food for guests courtesy of the caterer, Upper Crust. The tables were adorned with beautiful flowers in mason jars and jelly jars with candles. We tried to carry the focus of the play throughout every detail of the evening, from butterfly-shaped dishes on the tables to relabeled wine bottles featuring the playbill photo cover and What Were We Talking About? 2015 for the red wine and the map of Nachtoches, LA for the Magnolia Blanc. Each performer involved did a wonderful job and worked so hard to get to the heart and soul of her character.

If I had any advice to pass along to others who might consider bringing this important play to their communities, it would be…

  • Start early! It can take time to recruit sponsors for the event and to advertise within the playbill. It also takes some time to get the word out about an event in order to sell the number of tickets necessary to make an event a success.
     
  • Don't forget to check what other events are going on in the area simultaneously because if it is a popular annual feature or something huge (like March Madness, for instance!), it can create an unnecessary obstacle that can be avoided simply by picking an alternate date and time.
     
  • Be sure to confirm the venue early to host the production. It is always a wise idea to ensure the location is set before you get your heart set on a particular date.
     
  • Consider all of those details that make the whole theater experience memorable for guests- like whether or not you'll include food and beverage, what kind of table decorations you will need, whether to hold other supporting events simultaneously such as a silent or live auction, raffle or door prizes.
     
  • When in doubt, it can sometimes be worthwhile to bring on an event coordinator to help you. They can be helpful in not only coordinating everything but offering advice on areas where you can allocate less resources and where to focus time and money in the planning.

Whatever kind of event you take on, whether it's putting on a production like this one or some other type of fundraiser or awareness event, it is so important to do something. Be proactive and bring EB Awareness to your community, because the more people learn about it, the more they want to help. And the farther our reach, the greater impact we can have and on more lives, too. I urge you to take the time to contemplate – what can you do? Because the cost of doing nothing is far too great.

Facing a Rare Disease

February 28 marks Rare Disease Day. For many families facing a rare disease, such as epidermolysis bullosa, it can be as taxing physically and emotionally on caregivers as it is on those diagnosed. Rare Disease Day is an international day of awareness established to educate those in the medical field, those in media, and those who create and enforce public policy that can directly impact these families.

As with previous years, Rare Disease Day 2015 will be comprised of campaigns across the globe intent on reaching hundreds of thousands of people and generating media buzz to be capitalized on by bloggers, tweeters, and interactive Facebook communities like ours in this era of social media and grassroots campaigning.

Although Rare Disease Day started in Europe in 2008 by EURORDIS and the Council of National Alliances, it has grown into a collaborative international effort worldwide connecting health professionals, legislators, researchers, and those in industries serving rare disease communities such as the EB community. Last year, a new record-high 84 countries participated in the awareness day.

For many families facing a rare disease, much of the battle is locating support resources, and accurate, timely health information. Some helpful sites focused primarily on providing relevant information about thousands of rare disease, such as EB, include:

For more information about Rare Disease Day or to see what related events may be taking place near where you live, visit www.rarediseaseday.org/. If you have been planning your own event to reach area media on the designated date, make certain to post it at the Rare Disease Day site so others can come out to support your campaign.

EB & Rare Disease Day 2014

This month marks Rare Disease Day, an annual day which observes the prevalence of rare diseases and their impact on the people living with them. It was started six years ago by EURORDIS and the Council of National Alliances, and its recognition has grown beyond being a European and become a world occasion with more than 1,000 events held since its launch.

 

The focus behind this one day is in line with what EB patients, families and their advocates set out to do every day – educate people; inspire others to become involved in advocacy, fundraising and research; and instill a better understanding of the kinds of challenges and needs facing the rare disease community.

 

Rare Disease Day has also been embraced by those in highly influential roles to garner more attention for the topic, including politicians and entertainers. Last year, over 70 countries from around the globe took part in what became the largest Rare Disease Day ever. On its own website, the coordinators of the event state their ultimate goal is for the World Health Organization to recognize the last day of February each year as one of its official days to help build international awareness of rare diseases.

 

Here in the EB community, it can be a perfect opportunity for families impacted by EB to speak up. Families could take the occasion to contact their elected representatives about any upcoming or current bills that could impact insurance coverage or funding that might benefit those afflicted with rare diseases.

 

So what other things could you do on a smaller scale to promote Rare Disease Day in your own community? Share information about the international event with your child’s school to explore opportunities to promote it there. Contact local newspapers and television channels. Reach out to any civic or social groups in the area to encourage them to host their own awareness event. Let your company’s HR department know about the annual event and inquire about any opportunities to promote there. Take to your social media channels like Twitter, Facebook, Google+ and LinkedIn and spread the word!

 

To read up about Rare Disease Day 2014, be sure to visit the official website at www.rarediseaseday.org.

Reflections on 2013

 

Whenever a year ends, we might feel compelled to look back on it and reflect on what happened – the victories, lessons learned and other memorable occasions. For us, 2013 was a pivotal year for the EB community and also for EB Resource, too.

 

We saw researchers continue pursuing research findings for a variety of EB-focused clinical trials already in progress. Organizations like DebRA of America, EBMRF and Jackson Gabriel Silver Foundation continued to spear efforts to raise awareness, funding for EB clinical research and support for the EB community. Planning for the Patient Care Conference got underway as details of next year’s event, July 30-August 2 in Nashville, Tenn., were announced.

 

In 2013, I moved from a member role on the Board of Trustees at DebRA of America to that Board’s President. The greater role and involvement has been a lot of work but exciting to be part of such a forward-thinking organization and I’m honored to be working alongside the other Board members and DebRA’s executive director Brett Kopelan.

 

Unfortunately, every year of triumphs and celebrations brings some sadness, too, and each time we would hear of another member of the EB community passing, we felt a sense of personal loss, which also brought many of us closer together to continue to fight for greater awareness for the disease.

 

What will 2014 bring? It’s hard to say for certain but I know as we all go forward, we’ll find new avenues for reaching out to others to educate them about this little-known disease and we’ll find other ways that we can be supportive of each other using the knowledge and resources we have and new ones that we collaborate on or create altogether.

 

We wish all of you a bright and beautiful new year, from our family to yours.

 

EB in the News

A lot has changed since we first launched the EB Resource blog a little more than 3 years ago. Finding links to anything related to epidermolysis bullosa was difficult — not that it’s gotten easy to do, but in 3 years’ time, there are definitely far more people talking about EB than there were before.

 

Each time we go online and find a new YouTube video or an article about a family hosting an EB-related fundraiser or a link to a local TV news outlet's story about a family faced with EB, we are encouraged. Our whole goal has been to start a dialogue across the country about EB, and our daily mission is to present these little snippits of conversations to our community to help further the talk within our own circles, our own schools and neighborhoods. And we’re definitely getting there.

 

In the past year, we’ve watched people across the country come together in support of young parents facing the loss of their children to EB — parents like inspiring mom Courtney Roth whose son Tripp prompted many to hold EB awareness rallies and fundraisers. We have witnessed prayer vigils and virtual campaigns to support families going through the touch-and-go nature of clinical trials like the Knuth family, as son Charlie underwent stem cell replacement at a Minnesota children’s hospital and faced both victories and setbacks throughout the process.

 

We are reminded each time we produce our own blogs that each new story we tell, information we share or organization we introduce, that it is another link that could be the lifeline for someone else. These stories also help give others a basic foundation of information about a disease so few know anything about. We know that any link we can put out there could catch the eye of someone looking to invest their time, clinical research efforts or even funding into a meaningful cause that could potentially change or save lives, maybe even the course of medical research as it is known.

 

So with just a few weeks left until we enter a new year, we invite you to join us in finding opportunities to launch conversation about epidermolysis bullosa – whether that means sharing your own story, encouraging others to tell theirs or motivating personal and professional networks to invest in learning more about EB. The collective voices of those with EB, their families, researchers, caregivers, fundraisers, bloggers, Tweeters, authors, nonprofits and other EB advocates – all of these efforts are what have allowed us to start the dialogue about epidermolysis bullosa. We look forward to joining all of them in expanding that conversation further in 2013 and hope you’ll join us.