Families on a Mission

 

Many families that I know divide up their responsibilities among members in the house. It may not be distributed evenly but each person usually has their role to play. For EB families, it is no different and that can mean not only house duties but care for the loved one diagnosed with EB and promoting EB awareness.

 

There are several ways that family members both immediate family as well as extended family can support the EB community within their own circles and during their daily interactions. It can be anything from hosting fundraisers or EB awareness events in their neighborhoods to finding unique ways to donate to organizations focused on supporting EB families and research. For example, those who frequently shop online can seek out nonprofit matching promotions such as Amazon’s Smile program which enables the user to choose what registered nonprofit on the site they want to benefit from their shopping dollars upon login. Other vendors including Gorjana Jewelry and NuSkin enable shoppers to purchase merchandise and see dollars donated directly to a specific EB organization.

 

Older siblings in an EB family can educate other children and teens through conversations or school awareness events about epidermolysis bullosa to help cultivate an informed and supportive environment. Extended family members such as aunts and uncles, grandparents or cousins may be able to lend a hand to support parent caregivers by providing backup care and opportunities for stress relief, something critical to any caregiver.

 

If you are part of an EB family, what role do you play? And consider this: is there something more you can do to support others outside of your family and within the EB community? Please comment here and share your own thoughts on the various roles people connected to or part of an EB family can play. We’d love to hear from you.

Your EB Story

 

What is it that draws us to want to know more about other people we may meet along the way? Often there is a common interest or bond of some kind. Within the EB community, many parents have taken an otherwise trying facet of their lives and found a way to not only inspire and educate others, but help build a support network. This has been done by simply sharing their story, whether it is by hosting an event in their community and introducing neighbors to what living with EB is all about or proactively reaching out to local media to share their story with a larger audience.

 

It can be a tough decision on how much we want to share as a family. In my various roles interacting with the EB community, I always strive to be an advocate for families and a supporter in whatever way I can help best, such as directing someone to a resource that I think might be especially helpful to a family. But my role as a mom and as a parent who has lost a child to the devastating disease only motivates me more to reach as many families as I can every day and educate others about EB who cross my path.

 

Before you decide how you can best tell your family’s EB story, you must determine just how much you are willing to open your family’s life to the outside world. As you often see on the EB Resource Twitter and Facebook feeds, several families have shared with local TV affiliates and newspapers about their family, and that includes allowing those media outlets to capture visually a candid view of the disease and what caregiving is entailed for a person with EB. If you agree to tell your story this way, you must be prepared for the possibility of additional attention after the story runs. Some families instead choose to tell their story their own way through blogs, books, photo galleries or YouTube videos. If you want to be an active part of the EB community and support and educate others, then do not lose sight that you are ultimately the final decision-maker on what is the best way to do this that will be the least disruptive to your family.

 

Whatever your personal circumstances may be or your view on what your role could be within the EB community, I encourage you to take the time to contemplate what more you can do to take the experience of living with EB and translate it for others. The wisdom and support you may lend to another family who have only begun to learn about the disease and what this diagnosis will mean can be invaluable. The impact you can have on bringing greater awareness to a relatively unknown subject like EB is immeasurable.

 

Springtime EB Awareness Events

From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.

 

Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).

 

In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.

 

  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.

 

  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
     
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
     
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.
     

Springtime EB Awareness Events

From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.

 

Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).

 

In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.

 

  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.

 

  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
     
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
     
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.
     

EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

Social Media and Support

It has been amazing to see the online EB community grow as much as it has over the past 5+ years. I have watched social media evolve into a means through which we can educate and raise awareness, a feed to interact and communicate and a bridge to minimize distance and connect people. Though EB is still considered a rare disease, our ability to link to one another quickly and on a timely basis about the subject makes the world feel a little less vast. 
 
 
 
 
It was just over six years ago that we first launched the EB Resource blog as well as our Facebook and Twitter pages. At the time, we set out to reach anyone directly impacted by epidermolysis bullosa to provide a place where they could turn to gather information about important resources available to EB patients and their families. We also hoped to begin growing a support network comprised of those profoundly touched by what they learned about EB, people who wanted to do something because of this awareness.
 
 
 
Across the social media universe, we have seen the power of connection and what it can do in all types of communities — whether it is groups of people joined because of a shared cause or concern, like interests or circumstances or a common mission. We have seen the reach of a community’s commitment to retweet and spread information within our own feeds during EB Resource’s annual tweet-a-thon held each October during EB Awareness Week. But we know there is always more we can do here to help facilitate a supportive environment and avenues for members of the EB community to connect. And that’s where we need your help.
 
 
 
As we continue to build the community in the new year, we hope to include other voices and resources we discover along the way and we want you to reach out to introduce them to us. Also, if there are topics or areas of interest you would like to see covered so we can add more value to the blog or create greater opportunities to interact across our Twitter and Facebook pages, we want to hear those ideas from you. Email me at leslie.rader@hollister.com. Help us make 2017 an even better year for connecting for the members of our community. Thank you in advance for helping us to do that.

A Year of Highlights

As all of us wrap up projects and prepare to bring this year to a close, it can be helpful to look back. We can use the occasion to celebrate favorite memories and victories, reflect on losses and the lessons we took away from them and look ahead to a new year and all that it may promise.

 

 

This has been a year marked by milestones and often some big surprises – in the world of technology, science, entertainment, even sports and politics. We had some big moments for the EB community this year. In February, Rare Diseases Day, an international day for bringing greater awareness to rare diseases and with which EB organizations around the world gets involved, had its biggest day ever. New countries took part and more organizations were involved than ever before, and any time greater attention is paid to rare diseases afflicting families among us, this sheds more light on epidermolysis bullosa, too. It was a great victory. It will be wonderful to see what new attention can be garnered in just a few months when the international day of events and campaigns launch again.

 

Specific to the EB community, 2016 marked the return of debra of America’s conference renamed the Debra Care Conference, and there was great turnout! Once again, the event featured many terrific guest speakers and opportunities for EB families to learn, share and interact. Debra also had another successful showing at its annual benefit in October which took place just before the start of 2016 EB Awareness Week. It’s great to see more families taking the opportunity to launch their own awareness campaigns and fundraising events during this time.

 

In our conversations at work and play and online in our social media circles, many of us have remarked how 2016 has been a rough year in terms of loss. We lost so many of our childhood icons and favorite entertainers this year. In the EB community, when we experience a loss, it is deeply personal for any of us who have experienced that ourselves as well as for those who have been intricately involved in EB research, fundraising and caregiving. To our EB families who have been personally touched by loss at home this year, our network of support offers its heartfelt condolences as you move forward into this new year. We know how difficult it will be for you, and we will continue to be there for you every step of the way and encourage you to stay connected to the EB community and as involved as ever, continuing to champion the cause for better treatments, more research and greater support for our families. I know it is a lot to ask, but we as a community are stronger because of every one of us who brings their dedication and commitment to the cause. All of us need each other in this community and that couldn’t be more critical than it is right now.

 

None of us can predict what the new year will hold but I look forward to more opportunities to interact with the families and individuals who make up the EB community. I wish you all a beautiful holiday season and a very happy new year.

Building Your Own EB Team

When we find ourselves facing a challenge, it can feel so much easier to conquer when we surround ourselves with others to support and strengthen. As EB families, this is no different. Epidermolysis bullosa is a complex, devastating and painfully exhausting disease for everyone involved — from patient and caregiver to directly connected family and friends who are in the care circle.

 

 

We frequently blog about the different support resources available that can help us when we feel defeated or struggle with overcoming a specific obstacle. Anytime we reach outside of ourselves we work toward building a stronger more diversified set of skills and attributes in our network, or as I like to think of it, our own team.

 

Here in November – in the heart of college football and pro football seasons and having just finished watching two hard-working teams go at it in the World Series for the major league baseball championship – the concept of teams is familiar to most of us who have taken part in some type of team along the way. Maybe we had a key role on a sports team in school or a specific responsibility on a work team for a project. We know firsthand how critical one player can be to an entire team’s success. Without that person’s contribution, the team’s primary goal can be nearly insurmountable. But gather all of the right talents and place them in the appropriate roles and you have a formula for victory.

 

So who do you have on your EB team? I hope if your family has worked closely with debra throughout the initial gathering of information following diagnosis that you consider me as the organization’s New Family Advocate and debra’s EB Nurse Educator staff as part of your team. What about in your own family and community? Are there particular relatives or other moms in the neighborhood who you have come to rely on for empathy, advice and occasional babysitting support?

 

Consider any source of emotional support a key partner for you and your family, such as a family priest or spiritual advisor; a counselor or therapist; and any parental support groups. Of course, your collective medical team from your primary physician to any specialists with whom you have worked to address medical or dental issues that may arise, all of these valuable care professionals are a part of your EB family’s team.

 

As with any team, its success depends on communication. It is important for you to keep others abreast of any new changes – for example, if a new medication is being introduced (or eliminated), anyone who may engage with your family member with EB in a caregiver role needs to be aware of such changes. As you grow your EB family’s team over time, keep in mind that their success in helping you depends on how open you are to receiving their help but also keeping everyone on the same page when it comes to the latest information about you and your family.