A Fond Farewell to You

For nearly nine years, I have worked with families at events and online for Hollister Wound Care introducing EB families and their supportive friends, family members and co-workers to products, resources and organizations to help them with the daily care challenges of epidermolysis bullosa. I have loved every bit of working with EB families and being a resource for them. It has been gratifying to support continued communication and strengthening of the EB community. Online, this has primarily been done through Facebook and Twitter communities and the development of the EB Resource blog. As mom to a “butterfly child” myself, having faced daily care challenges and loss as a parent, I will continue interacting with the EB community through my work with debra of America. However, here at the EB Resource blog and its social media counterparts, we will be saying a fond farewell and completing our online journey April 20.

 

We have appreciated the support the EB community has offered during our time here. Through the EB Resource blog, we’ve attempted to share a diverse range of voices from EB families and organization founders to researchers and business people lending their own unique professional talents to raise awareness and research dollars for EB treatments and a cure. We thank each of you for taking the time and for your candor in sharing your story.

 

Thank you to our followers and friends, too, on Facebook and Twitter for each like, RT, question and comment. And whether we were hosting a fundraiser or awareness campaign, we especially appreciated those of you who consistently lent their support for our annual Tweet-a-thons during EB Awareness Week every October.

 

I prefer not to say goodbye, particularly when I have no intention of going anywhere because the EB community is and will always be my home. The EB Resource blog and social media communities may be coming to an end later this month but consider this simply a change-of-address postcard for me. You will continue to see and hear from me elsewhere online, sometimes representing debra as a Board member and founder of its New Family Advocate Program at debra events and supporting others’ events and campaigns whenever possible.

 

Thank you again for all the support of EB RESOURCE these many years. I encourage you to continue making your voice heard in whatever capacity and through whatever channels are available to you. Speak up for yourself, your own EB family or families you know and care about.

 

Help continue the mission of making others aware of epidermolysis bullosa. You might even take the next few weeks to go back and read some of our previous interviews and blogs. And if you happen to see me at this summer’s debra Care Conference, be sure to tap me on the shoulder and say hello.

 

Sincerely,

Leslie Rader

 

Spring EB Awareness Events and Fundraisers

With spring just around the corner, we thought it would be a good time to mark our calendars for upcoming EB-focused events or EB team fundraisers scheduled during the next season. Help spread the word, take part yourself or get creative and lend your support in your own unique way. If you know of other EB awareness events or fundraisers planned for this spring, let us hear about it by emailing me at leslie.rader@hollister.com.

 

  • TEAM DEBRA and TEAM EBRP at the 2018 United Airlines NYC Half-Marathon (New York, NY) – Come out to cheer on teams for both debra of America and the EB Research Partnership as they participate in this annual running event which launches at 7:30 a.m. from Brooklyn Sunday, March 18. Inquire about any available spots on the team or make a contribution online and join them in raising much-needed EB awareness and funds for groundbreaking research. For more information, click here to go to the TEAM DEBRA page and click here to go to the TEAM EBRP endurance events page.
     
  • 2nd Annual Believe in Brady Fundraiser (Houston, TX) – Attend this special fundraiser to benefit EB Research Partnership that runs 3:30 p.m. to 6:30 p.m. at Levy Park Conservancy Sunday, April 8. Evening will include Cajun food, beer and wine, live zydeco music, kids’ entertainment and a silent auction. Tickets are $60 adults and $15 children. For more information, click here.
     
  • TEAM DEBRA at the 2018 Cincinnati Flying Pig Marathon (Cincinnati, OH) – Root for participants who have joined this endurance event to raise funds for debra of America’s programs and education when they hit the pavement walking and running at 6:30 a.m. Saturday and Sunday, May 5-6. Participants can take part in 5K, 10K, half-marathon and marathon events. The team’s fundraising goal is $10,000 so supporters can make a gift of any size and get behind the team from the sidelines or online. For more information, click here.
     
  • TEAM DEBRA at the TD Five Boro Bike Tour (New York, NY) – Members of TEAM DEBRA will be rolling through all five boroughs of NYC with staggered start waves beginning at 7:30 a.m. Sunday, May 6. The Wasie Foundation is challenging the team to raise $5,000 by March 31, and if they succeed, the Foundation will donate an additional $5,000. For more information, click here.
     
  • 12th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Take part in this yearly fundraiser in honor of Ellie Tavani and benefiting debra of America to be held at The Park Tavern 6:30 p.m. to 10:30 p.m. Thursday, May 10. All proceeds benefit the organization’s programs and services, as well as research for better treatments and a cure for EB. For more information, click here.
     
  • All in for a Cure 2018 (New York, NY) – Attend this fun Poker Night hosted by the University Club Wednesday, May 16. Supporters, attendees and poker players are urged to show their support for the EB Research Partnership’s efforts through this fun event that set a new fundraising record last year with – 135,000. For more information, click here.
     
  • 4th Annual dash4debra (Lake Forest, IL) – Root for the dash4debra team as they participate in this 5K run/walk at Lake Forest Academy 8 a.m. to 10:30 a.m. Sunday, May 20. New this year, the event offers a virtual runner option for participants anywhere in the world who want to lend their support. For more information, click here.
     

 

Turn Talents and Loves into a Mission

 

 

 

 

 

 

 

 

 

Over the years, I’ve met many supporters of EB-focused organizations who first learned of the disease through a friend or family member directly impacted by the disease or who came upon a story about someone in the community diagnosed with it and felt compelled to do something to help. Whenever we learn of someone facing something as daunting as epidermolysis bullosa, it’s common for part of that initial reaction to be an internal search of ourselves: “what can I do that might help these people in some way?”

 

Since most of us may not be equipped with medical research backgrounds or caregiving experiences, we may have to be more creative in that introspection. I always have a simple suggestion to those who ask me what can I do beyond a donation to debra of America or another EB-focused nonprofit: repurpose your talents to do good.

 

What do I mean by that? Perhaps you are a graphic designer or website developer and could support an EB family looking to create literature about EB for an upcoming fundraiser or to launch a simple site to host a blog or an event site. I’ve met up with photographers who offer special photography sessions for EB families sensitive to the family’s needs and budget. Some jewelry or fashion designers have devised ways to take their creativity and launch campaigns through the sales of their special crafted jewelry pieces or garments to raise funds and awareness for EB research or supplies funding. Writers have pursued articles in community and metropolitan newspapers, video journalists have sought families willing to let them share their story with others on YouTube or via area news programs.

 

But a person doesn’t need such a specific skill set to be a provider of hope and support. A local business owner can host events at their shop or restaurant to raise funds on select evenings or special occasions, and community groups like book clubs and women’s groups can coordinate events or ongoing means for getting neighbors on board to support a local family or adopt one in another part of the state or region, or throw their support behind an EB-focused organization that can assist families across the country.

 

So, what can you do? Think about our own networking circles, skills or interests? How can you take your own talent or passion and transform it into action to support EB families? I encourage you to take a little time later today to ponder that question. And if you do embark on a new venture to lend your support, I hope you’ll reach out to us here to comment on this blog or at our Facebook or Twitter pages to update us on what you’re doing. We’d love to hear from you. Good luck!

Made Your Summer Plans Yet?

 

 

 

 

 

 

 

 

 

 

 

 

We know it is only January but for EB families, we certainly hope this summer is already reserved for an important event for the EB community. For those who aren’t aware, this summer marks debra of America’s national conference, the debra Care Conference (DCC), held every two years and geared towards EB patients and their families. The conference, formerly known as the Patient Care Conference, is a wonderful opportunity for EB families to not only interact with each other but gather valuable information directly from EB community advocates, medical professionals and researchers, all while having a fun, relaxing summer vacation at a beautiful destination resort.

 

I’ve attended previous DCC events, meeting up with families and catching as many presentations as possible, and once again, I am looking forward to this year’s event. The 2018 DCC will be held July 22-25 at the Sheraton Grand at Wild Horse Pass in Chandler, Arizona, just outside of Phoenix. Speakers will be taking part and sharing information about the latest research being conducted to develop better treatments and find a cure for epidermolysis bullosa. There will also be wound care supply companies in attendance like Hollister Wound Care who I represent, and many of us will be on hand to answer questions and demonstrate products for families.

 

But aside from the obvious reasons for EB families to attend –the educational opportunities, valuable information and product samples as well as the beautiful hotel setting – the greatest benefit of all (in my humble opinion) is the chance to connect with other families that share similar experiences and challenges. When parents receive word of an EB diagnosis, they often feel alone in their struggles and questions, and the debra Care Conference reminds all of us that we are not alone, and that bond becomes stronger when people get to meet face-to-face and spend time together both learning about what they’re facing and simply enjoying some recreational activities with others with whom they can truly relate, no matter what part of the country they call home.

 

As with past conferences, debra of America will set up playrooms onsite along with fun activities that the children in attendance can enjoy supervised while parents go to presentations, talk to medical providers and vendors, and socialize with other adults.

 

July may seem far away, but this conference is a popular one, so I encourage you to sign up soon if your family plans on taking part. The DCC usually attracts around 600 guests from the EB community. If you’ll be joining us, make your reservation soon. Registration for the 2018 DCC is scheduled to start this month through debra. Keep up with their latest updates at their Facebook page or on their website at debra.org.

And to learn more about this year’s venue, visit the hotel’s website at wildhorsepassresort.com.

 

I hope to see you there!

 

A Look Back and a Look Ahead for EB Families

 

The new year will be upon us in just days. As we get ready to venture into 2018 uncertain of what the year may hold, we do know this: there are some exciting things ahead so let’s toast to the best of this year and what is yet to come.

 

In 2017, we saw a rise in the number of clinical trials in the U.S. and around the world focused on epidermolysis bullosa. As of December 2017, 20 trials are currently recruiting or launching though not yet recruiting, a strong indication that the research community dedicated to EB and other rare diseases is growing and becoming more vested in developing better treatments and a cure.

 

Various organizations that support EB patients and their families have continued their efforts to garner more media attention about the disease as well as research and resource dollars. Stories covered across major media outlets over the past year such as the Washington Post, New York Times, Forbes and Rolling Stone are reaching a wider audience and shedding light on a little-known disease. For The EB Research Partnership (EBRP), 2017 has meant record-setting fundraising dedicated to EB research including $1.3 million at its annual fall gala Action for Jackson and $135,000 at its annual poker night All in for a Cure, both held in NYC.

 

Groups also are making new strategic alliances to share valuable knowledge and data and encourage collaboration among clinical communities. Debra of America recently announced its new partnership with Jefferson Dermatology at Thomas Jefferson University (Philadelphia, PA) to establish the first ever Adult-only EB and Skin Cancer Clinic.

 

Next year, EB families can look forward to. Debra of America hosts its debra Care Conference July 22-25, 2018 at the Grand Sheraton at Wild Horse Pass in Chandler, Arizona. Held every two years, the event brings together EB patients and their families from across the country to meet with medical professionals, researchers and other resources to support EB families. As organizations like debra, EBRP, Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the public figures that support them, garner greater media interest and fundraiser support for their campaigns and events, new resources and knowledge can become more readily available to EB patients and the people who care for them. It is very exciting to see what may be in store for all of us living and working within the EB community.

 

For now, we wish you all a beautiful holiday season, and will look forward to connecting again in the new year. Be safe out there, everyone.

Showing Thanks to EB Lifelines

EB families endure a level of daily stress higher than most parents may ever have to undergo. To witness our children facing the pain, discomfort and uncertainty of epidermolysis bullosa is frightening. Out of necessity and sheer self-preservation, many of us assemble an informal support network, and these ‘EB Lifelines’ can be invaluable, not only in helping us manage the day-to-day care needs EB demands but for moral support and stress management.

 

November is a month characterized by the spirit of thankfulness, so when was the last time you showed these invaluable cheerleaders how much their support, friendship and care has meant to you and your family? We suggest taking the time this month to reach out and recognize those auxiliary caregivers in the family as well as friends and neighbors who help pitch in when the family is in need.

 

Maybe take a few moments to make an inexpensive but personalized, homemade card or crafted gift, or instead pick up a gift card to one of their favorite restaurants or stores as a gesture to say simply ‘thank you for being there for us.’ Does your lifeline like flowers or garden as a hobby? Even a flower delivery or purchase of a plant for them to add to their own garden can be a sweet way of saying thanks that will be welcomed warmly. As EB moms and dads, we know that a gift card, flowers or handmade craft cannot possibly convey the magnitude of the gratitude we feel for all they do but it will feel nurturing to the soul to express our sincere appreciation for their support in the various ways they look out for us. Being on the receiving end will certainly remind them of the important place they hold in our life.

 

The family and friend circles that surround us during the holidays and other joyous occasions are special, but it is their presence during our greatest times of need which comfort us most. When a family faces a life-threatening disease like EB, those connections become so important to the livelihood and spirit of the family. Use this time of gratitude and appreciation for what you have and let those important lifelines know just how critical they are to your family.

 

Your Role in EB Awareness Week

 

The last week of October marks EB Awareness Week. For those who are unfamiliar with it, this special campaign was launched globally in 2007 and is now recognized by 112 countries across the world. Each year during the week of October 25-31, organizations and individuals across the world hold EB awareness events and fundraisers to not only build more awareness for epidermolysis bullosa but also garner greater media attention and involvement at all levels – in the business, social and legislative spheres.

 

For those directly impacted by the disease or with friends and family facing EB, it can be an ideal opportunity to host an event or get behind an established campaign. But what if you are neither and have only recently learned about EB and its devastating effects on those afflicted — what can you do during EB Awareness Week 2017?

 

Here are just a few ideas.

 

  • Check out the event calendars at various EB-focused organizations, such as debra of America, the EB Research Partnership and EBMRF, to name a few. See what upcoming campaigns are lined up during EB Awareness Week and figure out how you can best support organization- or supporter-led events in your community or online
     
  • Use avenues via your existing channels to raise research dollars or host your own event during EB Awareness Week. Many of us network informally, in the neighborhoods, community sports and school groups, and quite a few of us in the business sector, may do so for our services and companies. Why not look to any of our existing involvement as a channel to share and educate. Propose a campaign or small event held during the week or later in the year. Raise funds that could support a local family affected by EB or contribute to an organization with programs in place to support EB families across the country. Prove that there truly is power in numbers.
     
  • Encourage your children to get involved and learn more about EB. There is never a better opportunity than an awareness week for an important cause to teach our kids lessons in compassion and philanthropy. Demonstrate firsthand to your children the value of caring for others beyond ourselves and making a difference in the community.
     
  • Reach out to local media beforehand to make them aware of EB Awareness Week and if you know of anyone in your community directly affected by EB, encourage them to share their EB story with area newspapers and TV news affiliates.
     
  • Finally, here is one thing you can do straight from your phone or computer. Help EB Resource spread the word during our Annual 24 hour EB Tweet-a-thon that kicks off at 10 a.m. EDT Wednesday, Oct. 25 and runs through 9 a.m. Thursday, Oct. 26. We will be posting hourly on Twitter for 24 hours straight in recognition of the first day of EB Awareness Week. This year’s theme is 24 Reasons to Take Part in EB Awareness Week. You can help us reach even more people with your RTs. Share our posts with your own followers on Twitter and educate them about epidermolysis bullosa, too. Add the hashtag #RT4EB17 and help us raise awareness and compassion to learn more about EB as we set out to grow our community of support for EB families.

 

EB Happenings This Fall

Autumn is almost here, and this season, a variety of events are planned to raise EB awareness and research or resource dollars to support patients and families impacted by the disease. Here are some scheduled events or ongoing campaigns, as well as links where you can get additional information should you wish to get involved or lend your support. If you know of other events planned during the remainder of 2017, please let us know. You can email me at leslie.rader@hollister.com.

  • 7th Annual Night of Discovery (Long Beach, CA) – Indulge in a special evening ‘under the sea’ to benefit EB Research Partnership hosted by Aquarium of the Pacific 7 p.m. to 10 p.m. Saturday, September 23. This year’s theme is “Lighting a Path Towards a Cure,” and will include cocktails, dinner and an auction. For more information and to buy tickets, click here.
     
  • TEAM DEBRA at Bank of America Chicago Marathon (Chicago, IL) – Lace up the sneakers or support the existing crew of participants hitting the pavement in Chicago’s Grant Park on Sunday, October 8. Runners from all 50 states and over 100 countries will be taking part. Runners start at 7:30 a.m., 8 a.m. and 8:35 a.m. TEAM DEBRA proceeds will benefit debra of America. For more information, click here.
     
  • 19th Annual debra of America Benefit (New York City, NY) – Come out for this yearly debra fundraiser being hosted by Guastavino’s on Thursday, October 26. Event runs 6 p.m. to 10 p.m. and will include cocktails, hors d’ oeuvres, a silent auction and a seated dinner. For more information and to buy tickets, click here.
     
  • Debra Inaugural EB at TPC (Duluth, GA) – Tee up for a good cause at the debut of this benefit golf tournament at Sugarloaf Golf Club Monday, November 13. Registration, breakfast and driving range begin at 8 a.m. with shotgun start at 11 a.m. Take part on the links or attend the post-tournament reception. For more information, click here.
     
  • Prevail Activewear EB Fundraiser (Online) – Browse a new line of active wear launched by actor and fitness buff Josh Brolin and wife Kathryn and support EB families in the process as part of this Limited Time Offer. Fifty percent of the proceeds of Prevail Activewear will go directly to St. Jude’s Children’s Research Hospital and the Epidermolysis Bullosa Medical Research Foundation. For a closer look at this new clothing line, click here.
     

Wound Care Learning Resources at Hollister

*Information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional regarding any healthcare needs.

 

We have blogged in the past about specific wound care products that EB families may employ daily. As EB families bring others into their circle to support caregiving needs, they may need additional information for others who may be sharing in duties. Did you know that Hollister offers Wound Care Learning Resources for its wound and skin care products including informational demonstration videos at its website?

 

 

 

 

 

 

 

 

 

The Hollister line of wound care products has its own section of Wound & Skin Care Learning Resources dedicated to providing information for each product. For example, for families who might be using the Restore Contact Layer FLEX and Silver dressings, videos are available that not only explain Hollister’s TRIACT technology but also best use of the product. These videos also show products being applied and all related supplies or materials that may be used during the dressing process with that product.

 

In addition to online videos and product information, Hollister Wound Care also offers valuable tools to provide metrics to families as they evaluate products they are using and making decisions to adjust the supplies they use in their daily wound care process. The Wound & Skin Learning Resources section of the website includes such tools as the Pain Assessment Scale and the Wound Measuring Guide to help caregivers evaluate the dimensions of wounds being treated to select the right product and cut dressing materials properly.

 

If you or your family visit the site’s Learning Resources page and are unable to find your question answered, you can reach out directly to the team at Hollister by clicking here. But please note: you should always reach out directly to your physician with any questions specific to the care of your family member with EB. Getting as much information as you can to become as informed a caregiver as possible will ensure you have access to the most up-to-date knowledge about the disease and learn all that you can about the best treatment options available.

EB Community Goes Beyond Sea to Shining Sea

 

As we Americans recover from our Independence Day festivities, I thought I would take a moment to remind all of us just how broad the EB community is. Because it is such a rare disease, EB families can feel alone sometimes or like they are part of a very small network of communities scattered across different parts of the country. But as a greater number of people become familiar with epidermolysis bullosa here as well as abroad, the community at work to raise EB awareness and research funds, and tackle the clinical challenges at hand becomes bigger. International efforts are in place across the globe to find better treatments and work toward a cure.

 

In addition to the Debra International alliance hub based in Vienna, Austria, there are 50 Debra member groups established throughout the world. Besides debra of America, a number of very active networks support EB families in Australia, Canada, the United Kingdom, Ireland, France, Germany, India, Italy, Japan and Switzerland, to name only a few.

 

There are also research clinics and universities who have committed to Debra International’s EB-CLINET Partner program, a network of EB centers and experts designed to establish a centralized global site for the exchange of EB knowledge and clinical experience. Members of this international network are scheduled to meet at its fourth conference this September in Salzburg, Austria. It will provide participants a helpful, in-person opportunity to interact and share valuable clinical information with each other.

 

EB without Borders is another program that has been established (through Debra International) to support EB patients and their families in countries where there may be no support or debra member group yet established. Participating Debra member groups who support this initiative might provide these other countries in need mentoring support for the physicians trying to help the families, or other specialized services, supplies or knowledge.

 

EB clinical research and awareness campaigns are underway around the world. Though it may feel at times like we are alone as EB families, thousands of people across the world are not only facing similar challenges but have set out to conquer the same goals in mind: creating better treatments for this disease and hopefully one day eradicating it completely.