EB Events This Fall

With fall right around the corner, we thought it was a great time to make everyone aware of some upcoming fundraisers and awareness events that can benefit the EB community as well as educate others. If you know of any upcoming EB events, please let us know by emailing me at leslie.rader@hollisterwoundcare.com.

 

  • Mats Wilander Foundation & DebRA of America Tennis Pro-Am (Forest Hills, NY)
    Check out this 3rd annual event to be held at the West Side Tennis Club Wednesday, Sept. 2. Wilander will be joined by past pros and celebrity guests on three different court surfaces. Participants will enjoy food, refreshments, instructional clinics, competitions and more, with proceeds to benefit DebRA of America. For more information about this event, click here.
     
  • 2nd Annual Butterfly 5K (Lore City, OH)
    Walkers and runners can sign up for this event in honor of Hannah Blake Saturday, Sept. 12 at Salt Fork State Park, located at 14755 Cadiz Rd. The race course is paved so those with strollers and wheelchairs can enjoy this family-friendly event. The park also offers overnight accommodations for anyone looking to extend their visit with cottages, lodge rooms and campgrounds available.The day will include music, food and raffles. For more information about this event, click here, call 740-491-0396 or email abbyroberts93@yahoo.com.
     
  • Epidermolysis Bullosa Quarter Auction (Chesapeake City, MD)
    Supporters at this Saturday, September 26 EB fundraiser will be able to bid on donated items and enjoy food and beverages at VFW Chesapeake City located at 304 Basil Av. Tickets are $7 for two bid paddles in advance and $9 at the door. For more information about this event, click here or to register, call Carolyn at 443-655-7816.
     
  • Medtronic Twin Cities Marathon Weekend (Minneapolis-St. Paul, MN)
    EB Research Partnership is taking part in this annual marathon Friday through Sunday, October 2-4 for the organization's support of the research work of Dr. Jakub Tolar at the University of Minnesota. In the last four years, EBRP has raised almost $500,000 for its EB research fundraising efforts. For more information about this event, click here and for sign-up details, contact Abbie Levine at abbie@ebresearch.org.
     
  • Team DEBRA at the NYC Full Marathon and Half-Marathon (New York, NY)
    TEAM DEBRA is seeking the support of donors and fans to cheer them on at this year's marathon event Sunday, November 1. Since 2012, a team representing DebRA of America has raised over $100,000 for the organization's programs and services. For more information about this event, click here.
     
  • 17th Annual DebRA of America Benefit (New York, NY)
    Art lovers and EB community supporters alike can come out for a special fundraiser Monday, November 16 at the Solomon R. Guggenheim Museum. This year's benefit will honor John F. Crowley for his extensive work in the rare disease field. For more information about this event, click here.

EB Events This Fall

With fall right around the corner, we thought it was a great time to make everyone aware of some upcoming fundraisers and awareness events that can benefit the EB community as well as educate others. If you know of any upcoming EB events, please let us know by emailing me at leslie.rader@hollisterwoundcare.com.

  • Mats Wilander Foundation & DebRA of America Tennis Pro-Am (Forest Hills, NY)
    Check out this 3rd annual event to be held at the West Side Tennis Club Wednesday, Sept. 2. Wilander will be joined by past pros and celebrity guests on three different court surfaces. Participants will enjoy food, refreshments, instructional clinics, competitions and more, with proceeds to benefit DebRA of America. For more information about this event, click here.
  • 2nd Annual Butterfly 5K (Lore City, OH)
    Walkers and runners can sign up for this event in honor of Hannah Blake Saturday, Sept. 12 at Salt Fork State Park, located at 14755 Cadiz Rd. The race course is paved so those with strollers and wheelchairs can enjoy this family-friendly event. The park also offers overnight accommodations for anyone looking to extend their visit with cottages, lodge rooms and campgrounds available.The day will include music, food and raffles. For more information about this event, click here, call 740-491-0396 or email abbyroberts93@yahoo.com.
  • Epidermolysis Bullosa Quarter Auction (Chesapeake City, MD)
    Supporters at this Saturday, September 26 EB fundraiser will be able to bid on donated items and enjoy food and beverages at VFW Chesapeake City located at 304 Basil Av. Tickets are $7 for two bid paddles in advance and $9 at the door. For more information about this event, click here or to register, call Carolyn at 443-655-7816.
  • Medtronic Twin Cities Marathon Weekend (Minneapolis-St. Paul, MN)
    EB Research Partnership is taking part in this annual marathon Friday through Sunday, October 2-4 for the organization’s support of the research work of Dr. Jakub Tolar at the University of Minnesota. In the last four years, EBRP has raised almost $500,000 for its EB research fundraising efforts. For more information about this event, click here and for sign-up details, contact Abbie Levine at abbie@ebresearch.org.
  • Team DEBRA at the NYC Full Marathon and Half-Marathon (New York, NY)
    TEAM DEBRA is seeking the support of donors and fans to cheer them on at this year’s marathon event Sunday, November 1. Since 2012, a team representing DebRA of America has raised over $100,000 for the organization’s programs and services. For more information about this event, click here.
  • 17th Annual DebRA of America Benefit (New York, NY)
    Art lovers and EB community supporters alike can come out for a special fundraiser Monday, November 16 at the Solomon R. Guggenheim Museum. This year’s benefit will honor John F. Crowley for his extensive work in the rare disease field. For more information about this event, click here.

Looking Out for Each Other

*The 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 in regards to your healthcare needs.

One aspect of the EB community that has always struck me is the willingness of so many people to support others. When another person is going through the same thing that we are experiencing or have been through in the past, it can be personally gratifying to share our own coping strategies or stress management tips and help someone reduce some of the anxiety we might have once faced.

On PBS's This Emotional Life, they examined how important social connection is to our happiness and found that belonging to a group or a community can give us a sense of identity. Certainly no one chooses to be diagnosed with EB or to be a family learning how to live with the disease daily, but when we have the chance to connect with others who share that distinction and those same challenges, it can provide encouragement and support, and help us to feel part of something larger than ourselves, a community for which we have our own unique role and responsibilities.

What are yours? As part of the EB community, what role do you see yourself playing in other people's lives, either those directly in front of you or within your personal circle, or out there among the rest of this tight-knit but geographically spread out EB community?

With the onset of online support groups, too, we can talk things over and share what we're feeling and experiencing with people clear across the globe who can still serve as a sounding board or even offer their own personal strategies for coping with the stress of living with EB. Sites like www.supportgroups.com and www.dailystrength.org can connect people with similar circumstances, and while I do not endorse these or any particular sites, online support groups are simply another avenue that some people have found helpful for showing support and receiving it from others.

Any community is only as strong as its members so we must do what we can as caregivers, as parents and as patients to make ourselves a priority. That means taking steps to ensure we have a support network in place and finding opportunities to give back as well so we can feel the joy of helping another person whose challenges we identify with and maybe even lighten the burden of their stress and anxiety.

The Latest in EB Research

A number of clinical trials are presently recruiting or already in progress that may have a tremendous impact on the EB community. By accessing the U.S. National Institutes of Health (NIH) website, we are able to offer a useful summary of these research trials that have been logged by the NIH.

Currently, there are 12 open, international, EB clinical research trials listed as active, with three of the studies not yet recruiting and three of the other international studies listed with unknown recruiting status. Of the remaining six EB research studies which are open and recruiting, four of them are being run within the United States and two are active in other internationally-based locations.

The following summary spotlights key background information related to the four open and recruiting U.S. studies. For the complete, up-to-date details about each of the EB studies open and recruiting here in the U.S. as well as internationally, please visit the NIH’s Clinical Trials page here: http://clinicaltrials.gov/ct2/results?term=epidermolysis+bullosa&recr=Open.

The following is not an endorsement but a brief summary of EB clinical trial background information available at this time and is strictly for informational purposes only. For more information, visit the links provided. You should also consult your health care professional and thoroughly understand the potential risks involved with a clinical trial before you participate in any clinical trial. We take no responsibility for any results or outcomes associated with the following clinical trials.

 

  • Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa. Led by principal investigator and associate professor at Stanford University Jean Yuh Tang, this study launched in December 2010 and was last verified in February 2015. The study is a collaboration between the university and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. During the study, researchers create a graft of the participant’s skin that has been genetically engineered in a culture to attempt correcting the cellular protein deficiency that led to the RDEB. Investigators then transplant the “corrected” cells back onto the patient’s skin. For more information about this study, click here to link to ClinicalTrials.gov.

 

  • Stem Cell Transplant for Epidermolysis Bullosa. Last verified in April 2015, this study by the Masonic Cancer Center at the University of Minnesota attempts to test a primary hypothesis that the infusion of bone marrow or umbilical cord blood from a healthy donor will correct a collagen, laminin, integrin or plakin deficiency and reduce the skin’s fragility caused by severe forms of EB. A secondary hypothesis also examines the impact of mesenchymal stem cells from a healthy donor on the safety and efficacy of an allogeneic hematopoietic stem cell transplant. For more information about this study, click here to link to ClinicalTrials.gov.

 

  • Characteristics of Patients with Dystrophic Epidermolysis Bullosa. Jean Yuh Tang at Stanford University is also conducting a strictly observational study by screening subjects with DEB to evaluate the characteristics of these patients, who may develop severely painful blistering and open wounds. Last verified in February 2015, this trial involves the study of cells to support the development of future therapy strategies. For more information about this study, click here to link to ClinicalTrials.gov.
     
  • Study of Efficacy and Safety of SD-101 Cream in Patients with Epidermolysis Bullosa. Sponsored by Scioderm, Inc., the target of this study is to evaluate the efficacy and safety of SD-101-6.0 cream versus a placebo in the treatment of EB. Launched in November 2009 and last verified in May 2015, this study is currently recruiting participants in various locations across the U.S. including the University of Colorado School of Medicine (Aurora, CO), Ann & Robert H. Lurie Children's Hospital of Chicago (Chicago, IL), Washington University School of Medicine (St. Louis, MO), University of North Carolina School of Medicine (Chapel Hill, NC), Cincinnati Children's Hospital Medical Center (Cincinnati, OH), and Texas Dermatology and Laser Specialists (San Antonio, TX), as well as in France, Italy, Austria, and the U.K. For more information about this study, click here to link to ClinicalTrials.gov.

EB Voices on a Mission

The EB community is brimming with supportive people who have figured out the best way to use their talents and platform to make a difference in the lives of families impacted by the disease. We like to occasionally use our blog to recognize those efforts both as a way to share our gratitude for their creativity and determination as well as to inspire others to find their own unique path to do some good for EB families. For May, a month associated with celebrating some very special women — moms everywhere — it seems appropriate that most of the EB voices being celebrated in this blog are moms or daughters on a mission to support the EB community.

  • Elaine Fuchs, stem cell pioneer
    Fuchs recently earned the highest scientific honor awarded for her groundbreaking work in stem cell research. She has been hailed as the first scientist to biochemically characterize keratin and then go on to clone identified strands in her lab. Click here for a recent article to learn more about a woman who has truly helped the EB research community make tremendous strides.
     
  • Dozier-Libby Medical High School “Super Students”
    On the surface, Iliana Azevedo, Cassie Pambid, Maria Romero and Diana Sanchez might simply appear like typical teenagers or high school students but a recent school project that implored them to “Be the Change” was precisely the inspiration they needed. The group ventured into learning more about something many people knew nothing about — epidermolysis bullosa. Once they did, they felt compelled to do more and so they did, and raised $2,000!
    Click here to learn about this group of amazing students in a recent article.
     
  • Patrice Williams
    As a mom both to 6-year-old Jonah Williams who lives with EB every day and a toddler, Patrice Williams is one busy lady but she continues to be a regular voice as a mommy blogger in the in the EB community with her Before the Morning blog. And just this weekend coming up, she and husband Matt will host their fourth annual Jogging for Jonah event in Tanglewood Park in Clemmons, NC. Proceeds benefit DebRA of America. Click here for details about the event. Kudos to Patrice and her family for doing their part to remind us that no matter how busy our lives can get, there is always a way to come together and do something good for others, too.

These are only a few of the awesome people who are making a difference in the lives of others here in the EB community. There are many more and we will continue to introduce them to you on a regular basis on our blog.

If you are involved in any upcoming EB fundraisers or awareness events, or know organizers who are, please send us the information so we can share it with our friends on Twitter and Facebook, as well as here on the blog. Just email me at leslie.rader@hollisterwoundcare.com.

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.

Growing Support for EB Awareness

Whenever we have the opportunity, we like to share information about upcoming EB awareness events and fundraisers so that our fellow members of the EB community show their support or help spread the word through their own social media channels. Here is a diverse list of events we have learned will be taking place over the next few months, and it involves everything from running to biking to gambling.

  • 2015 New York City Half Marathon (New York, NY)
    Supporters can come out to cheer or donate to TEAM DEBRA taking part in this race event on Sunday, March 15. Runners will take a 13.1 mile tour of The Big Apple, and 100% of TEAM DEBRA's donations raised will go toward DebRA of America's programs and services. For more information about this event, click here.
     
  • Cycle for a Cure (New York, NY)
    If bicycling is more your interest, a fundraiser is scheduled later this month that will allow participants to take a fun bike ride together, again around New York City. The event starts at 2:30 p.m. Saturday, March 21, at SoulCycle's West 27th St. Studio. Participation is open to cyclists age 18 and over with tickets $50 general admission and $75 VIP. For more information about this event, click here.
     
  • Dig Up a Cure for EB (Lexington, NC)
    Families can take part in a volleyball tournament with six or more players required per team, with two separate brackets based on skill level, at this event scheduled Saturday, March 21, at North Davidson High School located at 7227 Old U.S. Hwy. 52. For more information about this event, click here and scroll down to one of the North Carolina event entries.
     
  • What Were We Talking About? An original play (Louisville, KY)
    Those in or near the Louisville, KY-area can come out for a performance of an original play written by the Wyoming Magnolias and being performed at 6 p.m. Saturday, March 21, at Gardenscourt Louisville Seminary, with proceeds to benefit the EB community. For more information about this event, click here.
     
  • Cyndi's Wish for a Cure (Miss Point, MS)
    Supporters can shop at this garage sale with proceeds benefiting DebRA of America. Event takes place 6 a.m. to noon Saturday, April 11, at 17729 Hwy. 613. For more information about this event, click here.
     
  • All In for a Cure (New York, NY)
    Poker fans can have some fun and benefit the EB Research Partnership at this debut Texas Hold 'em EB fundraiser 6 p.m. to 10:30 p.m. Thursday, April 23, at the Penn Club. For more information about this event, click here.
     
  • Flying Pig Races (Cincinnati, OH)
    This series of 10 race events takes place over Saturday and Sunday, May 2-3, featuring a marathon, half-marathon, 10K, 5K, 4-person relay, Beer Series, High School Challenge and Kids's events. For a third consecutive year, DebRA of America has been selected as the official charity partner for this 17th annual benefit and will have a tent set up at the event. For more information about this event, click here.
     
  • 9th Annual Butterfly Wishes for Ellie (Atlanta, GA)
    This benefit event and silent auction in honor of Ellie Tavani will be held on Thursday, May 7, at The Park Tavern in Midtown Atlanta. Last year's event raised nearly $50,000 for DebRA. For more information about this event, click here and scroll down to the Georgia section.
     
  • 4th Annual Jogging for Jonah (Clemmons, NC)
    This race event in honor of Jonah Williams is scheduled to start at 8 a.m. Saturday, May 9 at Tanglewood Park. The day will include a 5K race and fun run, as well as a raffle, face painting, inflatables, food and beverages, music and more. Proceeds benefit DebRA of America. For more information about this event, click here and scroll down to one of the North Carolina event entries.

If you know of some future EB awareness events or fundraisers scheduled, please reach out to us at leslie.rader@hollisterwoundcare.com so we can help promote these upcoming benefits in future social media posts or blogs. And many thanks in advance to all of those who have invested their time, energy and resources in coordinating and supporting these events to directly benefit the EB community. We are sending best wishes to all of you for very successful events!

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.

What’s Next for the EB Community?

As we begin a new year, it is exciting to anticipate what lies ahead. Each 365 days we get a few steps closer… closer to educating more people about the skin disorder; closer to reaching more recently diagnosed patients and their families to get tools and information into their hands that they may need; and closer to connecting more clinical researchers to develop better treatments or even a cure in the future. EB awareness has been a core mission for us here at the EB Resource blog since the beginning, and that has not changed. It is just one goal amid many and some very specific missions at other EB-focused organizations, such as DebRA, the EB Research Partnership, EBMRF and other dedicated groups.

Every year, our community grows. New families are touched by the disease, and often their family and close friends join our circle and demonstrate a willingness to learn and share their new knowledge with others. And as that circle expands, we have a greater opportunity to communicate more broadly than we did before and inspire others to ask themselves questions, such as: how can I use my sphere of influence to get the word out about this disease? What talents or skills do I have that could possibly lend themselves to support EB families or campaigns to assist them? And are there specific actions I can take in terms of events, campaigns or community/political involvement that may make a difference for EB resource fundraising, research progress or other tools to support the cause?

Each year, the medical community re-examines current clinical trials underway and frequently launches additional research to test new treatments by working closely with EB patients and their families. What new trials might 2015 include? It is too early for us to share here, but, as always, you can expect we will be keeping our eyes and ears focused on the latest news of these clinical trials and sharing with you what we learn.

A new year is a wonderful time to look back and assess, as well as look ahead and target those things we want to do. So we suggest at this ideal time, the start of a fresh new year to ask yourself the question, 'what is next for the EB community?' Because that will also be very much up to you to decide. And we look forward to a new year of educating others about EB with you.

A Year of Enlightening

Every time the year comes to a close, it is a great chance to reflect on all that has taken place. There are so many new people we have been introduced to within the EB community and, of course, many big events we have shared together, the biggest of course being the bi-annual Patient Care Conference (PCC). What a wonderful event that was hosted by DebRA of America and the team at Gaylord Opryland Resort and Convention Center in Nashville this summer.

At this year's PCC, many families got an opportunity to interact with those deeply entrenched in the latest medical research and clinical trials revolving around epidermolysis bullosa treatments and the search for a cure. They also got the chance to meet with others diagnosed with EB and their families. Nothing is more inspiring than finding out we are not alone in our challenges and getting valuable insight as well as practical suggestions about caregiving, food and shopping challenges, and other areas of living with EB. This year's event sought out to educate families, the medical community and others directly impacted by those facing EB, and it certainly succeeded at that.

Once again, we launched our own interactive effort to make more people aware of EB with our annual EB Tweet-a-thon during EB Awareness Week in late October. Hope you were able to take part and share some if not all of our RTs posted hourly for 24 straight hours. If we even educated just a few dozen new people about this rare disease they had never heard of before, then collectively, we helped raise the presence of these families in need of support both from their neighbors and medical communities worldwide.

Education is a powerful tool to make things happen. Each time we take even a few moments to share information with another person or group of people, that shared knowledge holds the power to affect change or compel others to take action. I don't know what resolutions you may be settling in on for the new year, but I do hope one of them is to continue helping to raise EB awareness by whatever means available to you.

Thank you, everybody, for all of your support this year at the blog and in our Facebook and Twitter communities. We look forward to a bright, promising new year with each of you. Best wishes for a safe and happy holiday season.