Latest EB Research Updates

From time to time, we share information about certain clinical trials that are currently in progress and in some cases, still recruiting participants. We highlight trials that could possibly benefit the EB community through its research findings and use of it in creating more powerful treatment for the skin disease. Using the U.S. National Institutes of Health (NIH) website, we have compiled a summary of these research trials that have been logged by the NIH.

 

 

As of June 2017, there are 22 open, international, EB clinical research trials listed as active, with one of the studies not yet recruiting. Of the remaining 21 EB research studies which are open and recruiting, 13 of them are being run within the United States and eight are active in other internationally-based locations.

 

The following summary includes general background information related to the 13 open and recruiting U.S. studies. For complete, up-to-date listings for all 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 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.

 

 

· Study of Efficacy and Safety of SD-101 Cream in Patients with Epidermolysis Bullosa. Sponsored by Shasa Hu, M.D., at the University of Miami, the aim of this study is to investigate the effects of a topical cream on patients 12 years of age and older that have been diagnosed with epidermolysis bullosa. Launched in July 2016 and last verified in May 2017, this study is currently recruiting participants at the University of Miami Department of Dermatology in Miami, Florida. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Stem Cell Transplant for Epidermolysis Bullosa. Launched in January 2010 and last verified in February 2017, this study by the Masonic Cancer Center at the University of Minnesota attempts to test two hypotheses. The underlying hypothesis is that the infusion of bone marrow or umbilical cord blood from a healthy unaffected donor will correct the collagen, laminin, integrin, or plakin deficiency and reduce the skin fragility characteristic of severe forms of EB. A secondary hypothesis is that mesenchymal stem cells from a healthy donor will enhance the safety and efficacy of the allogeneic hematopoietic stem cell transplant as well as serve as a source of renewable cells for the treatment of focal areas of residual blistering For more information about this study, click here to link to ClinicalTrials.gov.
 

· Characteristics of Patients with Recessive Dystrophic Epidermolysis Bullosa (RDEB). Jean Yuh Tang at Stanford University is screening subjects with RDEB to evaluate characteristics of the subjects and their cells to develop new strategies of therapy and determine whether subjects could be candidates for treatment studies. This observational study at Stanford University in Stanford, California was launched in November 2009 and last verified in March 2016. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Safety and Efficacy of Diacerein 1% Ointment Topical Formulation Compared to Placebo for Subjects with Epidermolysis Bullosa Simplex (EBS). This study with an anticipated launch date of May 2017 was last verified in June 2017 and is being led by sponsor Castle Creek Pharmaceuticals, LLC. The purpose of this interventional study, being held at Texas Dermatology and Laser Specialists in San Antonio, Texas, is to compare the efficacy of Diacerein 1% Ointment to Control Ointment when applied once daily for 8 weeks in subjects with EBS. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Gentamicin Therapy for Recessive Dystrophic Epidermolysis Bullosa (RDEB) Patients with Nonsense Mutations. Sponsored by the University of Southern California, the target of this study is to evaluate the safety and efficacy of intravenous gentamicin in RDEB patients. In theory, this intravenous administration has the possibility of treating simultaneously all skin wounds of patients. Investigators also propose optimizing the concentration and manner of delivery of topical gentamicin. Launched in January 2017 and last verified then, this study is currently recruiting participants at the University of Southern California in Los Angeles, California. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Gene Transfer for Recessive Dystrophic Epidermolysis Bullosa. This study launched in December 2010, led by principal investigator and associate professor at Stanford University Jean Yuh Tang, and was last verified in February 2017. The interventional study is a collaboration between the university and the National Institute of Arthritis and Musculoskeletal and Skin Diseases as well as Abeona Therapeutics. This trial, which is being conducted at Stanford University School of Medicine in Stanford, California, will create a skin graft, which the investigators call "LEAES," using the patient's own skin cells that have been genetically engineered in the lab to express a missing protein called type VII collagen. The corrected cells will be transplanted back to the patient. For more information about this study, click here to link to ClinicalTrials.gov.
 

· MT2015-20: Biochemical Correction of Severe EB by Allo HSCT and Serial Donor MSCs. Launched in March 2016 and last verified in February 2017, this study by the Masonic Cancer Center at the University of Minnesota in Minneapolis, Minnesota is a single-institution, phase II study established to determine the event-free survival at 1-year following an allogeneic transplant and serial mesenchymal stem cell (MSC) infusions from a related donor or matched unrelated donor for the biochemical correction of severe EB. For more information about this study, click here to link to ClinicalTrials.gov.
 

·A Study of FCX-007 for Recessive Dystrophic Epidermolysis Bullosa (RDEB). This study, launched in June 2016 and last verified in April 2017, is led by Fibrocell Technologies and administered at Stanford University in Stanford, California. The purpose of the study is to evaluate the safety of FCX-007, evaluate the C7 expression and presence of anchoring fibrils resulting from FCX-007, and to analyze wound healing as a result of FCX-007 administration in subjects with RDEB. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Survey to Identify Burdens and Unmet Needs of Patients with Epidermolysis Bullosa. Launched in April 2017 and last verified in May 2017, this observational study sponsored by Amicus Therapeutics in Cranbury, New Jersey, intends to collect information on key aspects of life with epidermolysis bullosa (EB) including diagnostic journey, treatment, management, daily living challenges, and overall psycho-social, socio-economic, academic and family impact. For more information about this study, click here to link to ClinicalTrials.gov.
 

·Study of Cellutome System for Treatment of Individual Lesions in EB Pts. Led by principal investigator Jakub Tolar, MD, PhD of Masonic Cancer Center at the University of Minnesota in Minneapolis, Minnesota, the target of this study, launched August 2016 and last verified in February 2017, proposes local wound therapy using epidermal skin grafting from the same donor that provided the hematopoietic graft, or from the same EB individual with a mosaic (naturally gene corrected) skin. In both cases permissive immune system and skin chimerism is expected to enable long-term epidermal engraftment and wound healing. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Neurokinin-1 Receptor Antagonist for the Treatment of Itch in EB Patients. Sponsored by Jean Yuh Tang of Stanford University in collaboration with the Epidermolysis Bullosa Research Partnership and Menlo Therapeutics, Inc., this interventional study launched in July 2016 and was last verified in August 2016. The study held at Stanford University in Stanford, California aims to target the physiological mechanisms of pruritus (or itch), the most common complaint reported by patients with EB of all subtypes and determine whether daily oral administration of VPD-737 (5 mg) is effective and safe in adolescents and adults with EB. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Using Topical Sirolimus 2% for Patients with Epidermolysis Bullous Simplex (EBS) Study. Sponsored by Stanford University and led by Joyce Teng, MD PhD, this interventional study was launched in May 2016 and last verified in November 2016. The pilot study targets the dominant mutant keratin proteins in the skin to ameliorate the severity of EB simplex. The purpose is to improve the function of EB simplex feet with an application of topical sirolimus, 2%. For more information about this study, click here to link to ClinicalTrials.gov.
 

· Effect of Broccoli Sprout Extract on Keratinocyte Differentiation in Normal Skin. Launched in September 2015 and last verified in October 2015, this study led by Johns Hopkins University in Baltimore, Maryland features adult participants who will apply a broccoli sprout extract-jojoba oil compound to one arm every night under occlusion for a week with Jojoba oil alone applied to the other arm. At the end of that week, a 6mm punch biopsy will be taken from both arms and analyzed via polymerase chain reaction (PCR) and immunohistochemistry for differences in skin proteins. For more information about this study, click here to link to ClinicalTrials.gov.

Spreading the Word for Spring and Summer

With spring already here and summer just around the corner, we thought it would be a good time to share information about upcoming events or fundraising campaigns that debra of America and other EB-focused organizations have planned during that time. If you know of others, let us know. You can email me at leslie.rader@hollister.com.

 

 

 

  • All in for a Cure (NYC, NY) – Spend an evening trying your hand (or several) of Texas Hold’em Wednesday, April 13 at the Penn Club of New York as guests compete for prizes throughout the night and benefit the EB Research Partnership. The evening includes appetizers, cocktails, a light dinner and dessert. For more information and to buy tickets, click here.

  • 2nd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, April 16 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. To find out how you can show your support and to get more event details, click here.

  • Butterflies Keep Flying Book Launch Party and Fundraiser (Richmond, VA) – Come out to join Ali Pfautz, The Story Lady, when she brings her book Butterflies Keep Flying to the Barnes & Noble at Chesterfield Towne Center (11500 Midlothian Turnpike) Saturday, April 16 for a book launch and special readings at 11 a.m., 1 p.m. and 3 p.m. A percentage of sales will be donated to debra of America. For more information, click here.
  • 5th Annual Jogging for Jonah (Winston-Salem, NC) – This event to be held Saturday, May 14 at Pinedale Christian Church offers activities for the whole family including a 5K chip-timed race for the serious runners, a one-mile Fun Run for everyone else, kids’ activities, inflatables, face painting, raffles and more. All proceeds will be donated to debra of America. For more information, click here.
  • 2nd Annual dash4dEBra (Lake Forest, IL) – Lake Forest Academy serves as host Sunday, May 22 at this fundraiser race. Proceeds from the day support debra’s many programs providing medical supplies to families and patient access to specialists, as well as raising funds to support research efforts. For more information, click here.
  • 10th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Take part in this signature fundraiser event in honor of Ellie Tavani which raised nearly $50,000 last year for debra of America. This year’s event will be held at The Park Tavern Thursday, May 25. For more information, click here.
  • 2016 debra Care Conference (Grapevine, TX) – EB families are encouraged to sign up soon for this special event held every two years, and this year, being hosted by the Gaylord Texan Resort & Convention Center just outside of Dallas Sunday, July 24 through Wednesday, July 27. For more information and to register, click here.
  • 3rd Annual Knoxville 5K (Knoxville, TN) – Those who’d like to take part in a fundraiser to support EB families and who also enjoy a good race can lace up the sneakers Saturday, Aug. 16 for this race at Victor Ashe Park in honor of an area 2-year-old living with EB. The race starts at 8:30 a.m. with proceeds to benefit debra of America. For more information and to register, click here.

Thanking Those Who Spread the Word

 

Thanksgiving is a time during which many of us attempt to slow down (except during meal preparation) to remind ourselves what we have to be thankful for, so we think this is a perfect time here at EB Resource to do some thanking of our own.

 

When we set up EB Resource nearly five years ago, one of our core goals was to help members of the EB community connect with one another as well as with resources available to them in the medical, nonprofit and medical supply fields. We would not be able to set out to achieve this goal every day if it weren’t for the following invaluable people.

 

  • Nonprofits devoted to supporting EB Awareness and support for families impacted by the disease – From DebRA and EBMRF to EB Research Partnership and I Refuse EB, and several other grass roots organizations and groups of various sizes, these groups and individuals have dedicated themselves to finding their own unique niche for drawing more attention to the cause and raising funds for the particular need they hope to address. Each may have its own distinct goals and strategies but there is one tie that binds them all and that is a collective commitment to take action and inspire others to join in a movement to support the EB community.
     
  • Medical and Educational Institutions which have committed resources to EB research – Physicians and scientists are more readily joining forces on both the care and research fronts to develop and test new and improved treatments and explore potentially groundbreaking trials in the hopes of finding a cure for the disease. With care and research teams committed at such innovative institutions as University of Minnesota, University of Cincinnati Children’s Center and Stanford University, among others, many of us in the EB community remain hopeful that these brilliant minds will uncover new and promising developments.
     
  • Parents and Other EB Caregivers who share their story in the media, in their communities and online to educate others – We frequently share on EB Resource posts that spotlight EB families from across the world who have reached out to their local media to gain greater attention for their story and for the EB community as a whole. Each time a new link is cataloged on Google and other search engines, we offer another window for a glimpse at life with EB. Though we know that every story does not capture the same poignancy, accuracy or depth of the story, we are still encouraged that a growing number of media organizations are beginning to dig deep into the EB story, and we owe it to the many parents and caregivers who have shared their own family’s struggles through these articles, their own blogs or books to educate others about epidermolysis bullosa.
     
  • Supporters within and outside of the EB community who participated this year and in our past EB Tweetathons – We place much value on circles of influence and regardless of how you use your own social media accounts, so we thank those Twitter users who relay our annual messages during EB Awareness Week to their online friends and followers to help us educate and motivate others to get involved in raising EB awareness. We know it can take time, energy and diligence to retweet them all, but some of you do all that you can to make it happen and we so appreciate all who have taken part. Thank you!
     
  • Other Supporters, whether in manufacturing, the arts, business or other sectors – Messages continue to move out into the mainstream media from sources as diverse as Pearl Jam frontman, Eddie Vedder to tennis great, Mats Wilander to medical supply companies and large corporations, college groups, playwrights, photographers, actors and more who find unique ways to use their forum, audience or talents to shine a different light on EB and the people affected by it.

 

We are grateful to all of you for the many ways you’ve used your tools and voices to speak up for the EB community. And during this month of thankfulness, we hoist a mug of cinnamon-tinged apple cider or pumpkin-spiced latte around the dinner table of our EB community.

 

Thank you for all you do.

Teaming Up for EB Awareness

With EB Awareness Week right around the corner, we thought it would be a good time to share information about upcoming EB-related fundraisers and awareness events that we have learned about. If you know of others, please feel free to leave a comment on the blog, Twitter or Facebook with all of the details. And good luck to all of the event organizers! We are wishing you much success with your missions!

  • Virtual Strides for EB (Online) – EBMRF is hosting a unique month of online fundraising during which participants can register at the Virtual Strides website and connect their racing success at any location while promoting EB awareness. Thursday, Oct. 1 through Saturday, Oct. 31 Distances include 5K, 10K, and half-marathon. An FAQ about how Virtual Strides works can be a helpful read so visit this page here to learn more about the process. Cost to take part is $28. Register for the Butterfly Children virtual 5k/10k/Half Marathon and receive a custom race bib and 4" butterfly medal. A portion of the proceeds from this event will be donated to EBMRF. For more information or to register, click here.
     
  • EB Resource 24-Hour Tweetathon (Online) – It's time again for our annual tradition during which we devote 24 hours entirely to tweeting about EB on the hour, every hour. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and spotlight helpful EB resources and voices in the community. We ask each of you to RT whenever you can during that time and be sure to include our  hashtag #RT4EB. The Tweet-a-Thon to starts noon Monday, Oct. 26 and runs through the 11 a.m. hour Tuesday, Oct. 27. Thank you in advance for your support!
     
  • Community Council Webinar on Active and Upcoming Clinical EB Trials (Online) – In honor of EB Awareness Week, those interested in learning more about EB can register for a special webinar at 7 p.m. Tuesday, Oct. 27 presented by top researchers and representatives to answer questions about current clinical EB research. Researchers from various companies and educational institutions including Dr. Jakub Tolar from University of Minnesota and representatives from Stanford University will be on-hand. For more information or to register online, click here.
     
  • Team DEBRA at the NYC Full Marathon (New York, NY) – Show your support for the DebRA of America Team participating in the 2015 TCS New York City Marathon onSunday, Nov. 1. To help raise awareness and funds for research and free programs, sign up to be a a runner or donate! 100% of donations raised will benefit programs and services for EB. For more information, click here.
     
  • Action for Jackson 2015 (New York, NY) – Come out for a tasty evening of cocktails, appetizers and auction bidding at The New York Public Library 6:30 p.m. to 9:30 p.m. Thursday, Nov. 5 and support the EB Research Partnership. The theme this year is An Evening to Celebrate Progress. Attend the fundraiser and support the research efforts of the organization. For more information or to purchase tickets, click here.
     
  • Annual DebRA of America Benefit (New York, NY) – Spend an evening at the lovely Solomon R. Guggenheim Museum and enjoy an exclusive performance by iconic former American Ballet Theatre Principal Dancer Julie Kent along with others at this annual fundraiser to be held on  Monday, Nov. 16 at 6:30 p.m. to 9:30 p.m. Evening includes cocktails, hors d'oeuvre reception, silent auction, and a DJ set by platinum-selling singer/songwriter, Kate Nash. For more information or to purchase tickets, 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.

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.

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!

Thank You, EB Voices!

We wanted to take this month that celebrates thankfulness to send along our own gratitude to the individuals and groups whose work and words have helped to raise awareness, and, in some cases, research or support dollars for those diagnosed with EB and their families. We have frequently featured them here and called them "EB Voices" because they, in their own unique way, have spoken up and made their voice heard. This can be really difficult, particularly in a world of so many loud voices booming back at us while we try to bring focus to a rare disease like epidermolysis bullosa.

We have often featured those voices through interviews or special guest blogs. Since some of our followers could be new to our blog or have only joined us this year, we thought it would be a great opportunity to share some of those past links with you as our way of introducing you to merely a handful of the wonderful people out there who do their part to raise awareness about EB every day – some are patients, others  family members, and still others, authors or advocates, but all of them have something to say. And we are appreciative that they take the time to do something about it.

So we introduce you to some past featured EB Story conversations. Thanks for reading!

EB Awareness Week

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your healthcare professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.

EB Awareness Week is nearly here, an annual, international campaign to educate others about epidermolysis bullosa as well as garner support for EB families. Each one of us has the ability to make a difference and be a part of this collective effort. EB Awareness Week runs from October 25 through October 31. How will you be involved?

Here are some suggestions:

•    Support events far and wide in any manner possible.
Visit sites like DebRA of America, the EB Research Partnership, EBMRF and others for information about local and national events taking place during EB Awareness Week. Spread the word via social media platforms so that others who are located in those areas can take part and find ways to show your own support whether near or far, either through fundraising or promotional means.

•    Coordinate your own virtual or in-person EB Awareness event.
It’s not too late to kick off a fundraising or awareness campaign online or host a small event at work or in your neighborhood. Check with your HR representative about holding an informal fundraiser at the office or find out what is required to set up an information table outside your community center or local library.

•    Spread Your Own EB Message to Raise Awareness.
Do you blog? If so, why not include a special entry during EB Awareness Week? Or better yet, maybe blog something different about EB that people may not be aware of or post on a social media platform a different EB-related link each day. We appreciate you including EB Resource for one of them, if you do!

•    Extend a Hand Wherever It Is Needed Most.
If you personally know an EB family, take this time to reach out to them this week and offer to pitch in with some errands to alleviate stress. Or better yet, ask the parents what you and your family could do to best support them. Sometimes people are afraid to ask for help but when an offer is extended, it may be just what is needed.

•    ‘Pass It On’ During Our Upcoming Tweet-a-Thon.
Every year we take 24 hours to devote entirely to tweeting about EB hourly. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and demonstrate ways they can get involved to learn more or be a part of the movement to find a cure and better treatments for EB. We simply ask those who RT to include our designated hashtag #RT4EB. So look for that Tweet-a-Thon to begin 9 a.m. Tuesday, Oct. 28 and run through 8 a.m. Wednesday, Oct. 29.