Posts belonging to Category 'EB Resource Main'

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.
     

 

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.

Summer Sun Safety Tips

The summertime can present some harsh weather conditions for anyone, let alone an EB family. Between the heat and in some parts of the country, frequent rain showers and humidity that can cause extra perspiration, there are many reasons to take precautions in order to protect delicate skin.

We’ve gathered the following tips from a few resources offering tips for keeping your family, especially those with EB, safe from the sun’s harmful rays.

  • Try to focus activities either before 10 a.m. or after 4 p.m. wherever possible, as per Dr. Jeff Ashley, M.D., a clinical professor of dermatology at the University of Southern California, interviewed for an Education.com piece on Summer Sun Safety” by Anna Weinstein.
     
  • Make an effort to reapply any sunscreen within every two hours since it can easily wear off due to activity or perspiration, says Dr. Ashley.
     
  • For sunscreens, a 15 SPF though 30 or higher is preferred, according to Dr. Ashley.
     
  • Monitor and limit the intensity of children’s strenuous activity exceeding 15 minutes, as per The American Academy of Pediatrics in their online piece “Summer Safety Tips” on their site HealthyChildren.org. The Academy suggests that at the start of a strenuous exercise program or when traveling in a warmer region, that you should limit the intensity and duration of exercise and gradually increase this during a timeframe of a week to two weeks as the body adjusts to the conditions.
     
  • Given the added threat of skin irritation that can result from excessive moisture on the skin and rubbing against clothing during activities, bring extra articles of clothing so your child can easily change in the event of excess perspiration or moisture from a water sport activity, as suggested by the American Academy of Pediatrics.
     
  • Keep clothing loose and airy, and hats broad-brimmed, so they offer the most comfort as well as skin coverage to protect direct contact with sun, notes the American Academy of Pediatrics.
     
  • Keep kids hydrated! The American Academy of Pediatrics also suggests that parents should make either water or a sports drink available to children every 20 minutes while they are taking part in some form of exercise under the sun.

** Please note that the suggestions offered above are for informational purposes only and are not the opinion of EB Resource. Individuals should always consult their physician regarding any skin or wound care program or other care regimens.

EB Awareness Week Is Here!

Please share with us any events you know of for EB Awareness Week.

Each year, Oct. 25 to 31 marks EB Awareness Week both here in the U.S. as well as internationally. It is an opportunity for those who are personally impacted by EB and those who work closely with the individuals and families affected to make it their mission to educate the general population about EB. This has also become a popular time of year for many EB-focused organizations and families to host their own fundraisers and awareness events in their communities. (Click here for more of a background about EB Awareness Week.)

Last week, we told you about what to expect from this year’s Tweet-a-thon (which we’ll remind you of in a moment), but we wanted to take this time to let you know about fundraisers and other happenings across the U.S. that will be taking place. We hope you will forward this information on to your friends and family to continue spreading the word. And we encourage you to support any of these events for which it may be possible – whether it’s directly getting involved or just sharing the information with your own Facebook friends and Twitter followers who might be located in the area where the event’s being held.

So here are some events we know that are occurring during EB Awareness Week, as well as shortly after, in conjunction with this important time of year.

  • EB Resource Annual Tweet-a-Thon (Online only)
    Starting at 8 a.m. on Thursday, Oct. 25, we will be tweeting every hour as part of a 24-hour Twitter marathon designed to educate others about EB and encourage our followers and hopefully THEIR followers to spread the message across the twitterverse. The marathon concludes during the 7 a.m. hour on Friday, Oct. 26. In addition to raising awareness, we are out to raise funds for DebRA of America, but we need our followers’ help. For each tweet and re-tweet that includes the designated hashtag “#ebfund” during that 24-hour period, Hollister Wound Care will donate $1 to DebRA up to a maximum $2,500 donation. Be sure to bookmark http://www.twitter.com/ebresource and follow us @EBResource.
  • Action for Jackson 2012 (New York, NY)
    The Jackson Gabriel Silver Foundation (www.jgsf.org) is hosting its annual benefit on Friday, Oct. 26 from 6:30 to 9 p.m. at Christie’s, 20 Rockefeller Plaza in NYC. Tickets start at $175. Proceeds from the event will go toward JGSF’s research fundraising efforts, which support promising therapies being developed across the country to treat and cure EB. For more information about the event or to purchase tickets, visit www.actionforjackson.com. If you have any other questions, you can email co-founder Jamie Silver at info@jgsf.org or contact her by phone at 212-844-9369.
  • Honoring an EB Soldier (Arcadia, FL)
    Ben and Sirena Wiley of Central Florida recently reached out to their community and the general public to create an online fundraiser in honor of their son Ben Jr., who is diagnosed with epidermolysis bullosa and whose first birthday falls within EB Awareness Week. The online fundraiser, designed to raise funds to support the family’s medical bills and wound care supplies, has since wrapped up; however, the couple will be hosting an EB Awareness event Saturday, Oct. 27 from noon until 4 p.m. at the Elks Lodge in Arcadia. The event is slated to include fun games and activities for kids of all ages, a bounce house, cake and ice cream, dinners available for purchase and a silent auction from which all proceeds will be donated to DebRA of America. For additional information about the event, contact the Wileys at mrs.wiley1@yahoo.com or 863-990-9356.
  • New Baden Park EB Awareness Walk (New Baden, IL)
    The community of New Baden, IL, continues its annual tradition of a Walk for EB event at New Baden Park as part of EB Awareness Week and takes place Saturday, Oct. 27 at 3:30 p.m. T-shirts will be sold at the event with these proceeds benefiting DebRA of America. For more information about this year’s event, contact Jennifer McCaughtry at grantland_pooh@hotmail.com or by phone at 618-954-8439.
  • Tropical Smoothie Café Fundraisers (Henderson and Las Vegas, NV)
    Two Nevada locations of Tropical Smoothies will be taking part in this year’s EB Awareness Week. Customers will have opportunities to donate Thursday, Oct. 25, through Wednesday, Oct. 31, at the Henderson café located at 76 W. Horizon Ridge Pkwy. and 95 Fwy. as well as at the Las Vegas café located at 3390 Novat St. at Cheyenne and I-215 West. Each location will also be hosting fundraiser events on Monday, Oct. 29, for which the two cafes will donate a percentage of their sales to Pioneering Unique Cures for Kids (PUCK). For more information about these fundraisers, contact co-owner Michelle Schriver by email at michelle@makinvestments.com or by phone at 702-529-0852
     
  • EB-Focused groups at the 2012 ING NYC Marathon (New York, NY)
    We are already aware of two groups – DebRA of America and Jackson Gabriel Silver Foundation – participating as community charities in this year’s popular New York City marathon, which takes participants through all five boroughs of the city and is being held Sunday, Nov. 4. Click here for more information about Team DEBRA. Proceeds to this team will go toward DebRA’s various efforts to support EB patients and their families. Also, the Jackson Gabriel Silver Foundation is taking part in this year’s marathon with its own team. If you are interested in joining or contributing to the JGSF team, contact Jamie Silver at jsilver@jgsf.org. All funds raised by the JGSF team will go toward the organization’s EB research funding initiatives. For more information about the race itself, visit www.nycmarathon.org.

If you know of any other events, please share that info with all of us here, on our Facebook page or email us at leslie.rader@hollisterwoundcare.com. And good luck to any of you who may be hosting events in your own schools, workplaces or neighborhoods!

What to Know about Restore® Contact Layer FLEX dressing with TRIACT® Technology

* 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.

Hollister Wound Care recently announced the arrival of Restore Contact Layer FLEX dressing to its TRIACT Technology family of products. The new ultra-conformable contact layer features more flexible mesh and a gentle tack intended to improve the ability of the dressing to stay in place, especially in hard-to-wrap areas.

TRIACT Technology is a scientific formulation used in select Restore wound care dressings. These advanced dressings are designed to form an ideal moist wound-healing environment, with Restore Contact Layer FLEX dressings frequently being used for the treatment of many chronic and acute wounds, including wounds associated with EB.

Restore Contact Layer FLEX dressings have the following benefits:

  • Non-Adherent
    Virtually pain-free dressing removal for enhanced patient comfort.
     
  • Maintains a Moist Wound Interface
    Forms a gel in the presence of exudate.
     
  • Ultra-Flexible
    Comfortable for the patient during application and while in place.
     
  • Highly Conformable
    Can be shaped to fit contours of deep or irregular wounds and in difficult anatomical locations.
     
  • Easy to Apply
    Gentle tack of dressing helps keep it in place over the wound.

In a clinical study of use of a new flexible lipidocolloid dressing on acute wounds and chronic wounds cited by S. Meaume in the Journal of Wound Care (April 2010), Restore Contact Layer FLEX dressing was compared to the original Restore Contact Layer dressing. In most cases, Restore Contact Layer FLEX dressing was reported to be: more conformable, easier to apply on awkward locations, and more comfortable.

Anyone who has watched a child trying to cope with the pain of EB knows how heart-wrenching it can be. Wound dressings like Restore Contact Layer FLEX dressing with TRIACT Technology have been designed to offer the same benefits of the original Restore Contact Layer dressings – non-adherence for virtually pain-free removal – but with a flexible mesh that offers additional conformability and comfort and a gentle tack to help secure the dressing in place. It is ideal for use on wounds with fragile surrounding skin, and is therefore a good choice for EB families and caregivers.

If you would like more information about Restore Contact Layer FLEX dressing, please contact me at leslie.rader@hollisterwoundcare.com.

Sources:
EB Dressing Products, Hollister Wound Care
Meaume, S., et al, Use of a new, flexible lipidocolloid dressing on acute wounds and chronic wounds: results of a clinical study; J of Wound Care, 20(4), April 2010, 180, 182-185.

Related Posts:
What to Know When Using Restore® Foam Dressings
What to Know When Using Restore® Contact Layer Dressings
What to Know When Using Restore® Contact Layer Dressings with Silver
Using Restore© Calcium Alginate Dressings
What to Know When Using Restore® Duo Dressings
Using Restore® and Restore Lite Foam Dressings

Giving Thanks by Giving Back

At this time of year, many of us reflect on that for which we are most grateful. For some EB patients and their families going through an especially troubling time, this can be difficult. To members of our community, let’s use this opportunity to show gratitude for the advice, education and support each of us has been fortunate to receive from other families, those care specialists who have sincerely invested themselves in our lives, and groups like DebRA, EBMRF, EB Friends and more. How can we do that? We can pay it forward by sharing that knowledge and support with others now facing similar challenges.

So ask yourself: what is the best way I can show appreciation for the information and support my family has been able to receive and how can I take that support and information and pass it along to others who could benefit, too? Jot down your own thoughts here and make a plan to get started – today or this weekend!

In a way, we consider holidays like Thanksgiving a special gift, because they promptly remind us that no matter how bad things may get, we have also experienced a richness that other families and those not diagnosed with the disease don’t always get to know: a sense of community and genuine appreciation for the time spent together with loved ones.

Have a safe and happy Thanksgiving!

Sources:
Blogging Your Story: Five Things You Should Know (EB Resource)
Social Media for EB Storytelling (EB Resource)
Planning Your EB Awareness Campaign, (EB Resource)
100 Links for EB Families (EB Resource)

Related Posts:
Doing Our Part: What Can You Share?
Making the Hunt for Good Info Easier
The Importance of Connecting

EB & the Arts

For many people, exploration of the arts can be a wonderful means of escape from daily routines and mundane tasks. But the arts can do so much more, as a variety of art and music programs have demonstrated. Art also can serve as a valuable means for self-expression and as a coping mechanism for those battling disease, or facing stress and crisis as a loved one or caregiver.

Writer Colette Georgii points out the many healing benefits of art by providing a method that may help relax the mind, offer a means to communicate and share, and aid those too young to fully communicate through still-developing language skills. By providing children with art supplies or writing utensils and a blank canvas or notebook, you can encourage those who may be confused or stressed about the illness they face to channel that frustration and pain through a creative means of expression and help them alleviate the emotional stress of living with EB.

Music – playing or listening to it – can provide a helpful tool to encourage creative expression and channeling built-up emotions and anxiety through musical notes or song lyrics.

And whether it’s visual arts, the written word or music, the powerful healing characteristics of the broad spectrum of arts can certainly apply to people of every age from adults to children – and in every role, from caregivers and family members to the patients themselves.

Consider your own EB family. How have you incorporated the arts into your daily life? Have you discovered a new art form as a hobby, such as painting, drawing or sculpting? Or has music always made an emotional impression on you? Maybe learning a new instrument would provide an exciting new hobby to learn and simultaneously provide a wonderful creative outlet through which to heal – writing new songs or learning works by favorite musicians. If you enjoy reading, have you considered writing? And are you already expressing yourself through a private journal or a blog? Perhaps it is time to use those writing skills not only to offer insight to others going through similar challenges, but also to begin working toward some form of self-healing in the process.

There are plenty of creative avenues for self-expression that we’ve not yet mentioned, including dance, dramatic performance, storytelling, standup comedy, jewelry making, pottery, photography, fashion design, and so much more! Some patients or families facing serious or life-threatening illness may incorporate the use of formal art therapy into the patient’s or family’s daily or weekly regimen to support mental and emotional health and wellness. At the Art Can Heal website, the role of an art therapist is described as a facilitator of the “journey of creative self-discovery and release.”

Traditional art therapy could be a helpful tool for you and your family but may not be for everyone. Perhaps just an informal addition of the arts into your lifestyle could offer stress management or emotional wellness benefits.

Consider your own situation right now. How are you using the arts in your household currently? As a shared activity by which you gather and enjoy each other’s company? As a solo activity for general entertainment purposes? As a personal form of creative expression or stress relief? If the arts do figure into your lifestyle, how does such participation make you feel? What do you believe that you gain from it?

And for those who are not factoring the arts into the household or daily routine, do you see the value in incorporating them into your lives? If so, what are some things you could do this week to help yourself in this way?

Sources:
“How teachers can use art and music education to help children heal from trauma and crisis” (Helium, 12/04/09)
“What Is Art Therapy?” (Art Can Heal)

Related Posts:
Resources for Caregivers
Coping with Change
Social Media for EB Storytelling
Blogging Your Story: Five Things You Should Know

Our Facebook Community & the Power of Sharing

We love our EB Resource Facebook community, and it’s been so exciting to watch it grow. We’re coming upon the completion of just our second full year since launching, and we’ve grown to nearly 950 members! Nothing inspires us more than to see members post questions or information directly on the page for the group or start a dialogue with other members about some of the questions that we raise from time to time.

There are many different ways we can help each other as a community – from sharing insight about experiences we have been through, to educating and preparing others for what may lie ahead, to passing along info about favorite brands of clothing that our children have liked that are EB-friendly. The power of sharing is tremendous and we are reminded of this every day.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • The Facebook community is a great place for others to share how they’re handling upcoming holidays or special events. During EB Awareness Week, we asked members what they planned to do that week in honor of the occasion. Amber Jensen shared that she would be posting something every day that week about EB for her friends. Arnaud Buisson extended an invitation to any French followers in the community to join another Facebook group as well, DebRA France, and even changed his profile picture that week to the French organization’s logo. Not too long ago, many of us also were fretting about Halloween and how to keep this holiday fun for our kids who might struggle with scratchy masks or uncomfortable costumes. Logan England suggested making use of a sweatsuit as the basis of a fun costume. “Logan writes, You can do all kinds of things with a sweatsuit…paint bones on a black suit for a skeleton, or a hoodie sweatshirt with yarn pieces attached can be a lion’s mane, felt pieces for stripes and a headband with ears can make a tiger or zebra.” We absolutely love your creativity. File those ideas away for Halloween 2012 or the next costume party that pops up!
     
  • In September, one question we posed really drew a lot of responses from the community: when discussing daily EB challenges with other family members, what areas tend to raise the most questions or confusion? Katie Alexander Murray noted that people don’t seem to understand there are problems occurring internally as well as externally for those with EB. Others, as Elisabeth Upton Booth points out, seem to think it is just a temporary condition. “Some of our family think it will just go away! They don’t understand why Aiden is so grumpy – they think he is just being naughty,” she says. And then there are the misperceptions about the rest of the family, as Trisha Knuth notes. “Some people feel sorry for my ‘healthy children.’ They seem to think that because of Charlie’s EB that the other kids don’t get attention or fun times. That is way off,” Trisha writes. “Our healthy kids often have to wait to go to places or leave events early, but I can promise you that they would take Charlie any day over an island vacation, or a trip to a theme park.”
     
  • We know that as our community grows, we will be welcoming new members who may also be new parents of a child with EB, so we asked our members, during your first year of learning about EB, what questions would you suggest families ask early in the care process? Amy Stiller Bailey mentions eye abrasions as being one key care area that she did not realize would become an issue. “Kendall was probably in a lot more pain with abrasions and light sensitivity than I ever knew,” she says. In her family’s case, she says antibiotic drops and anti-inflammatory drops (both obtained through prescriptions) were the key to helping her child. Josie Tripp urges new parents to educate themselves as much as they can, ask questions and not be afraid to ask for help. “Get a good support system and connect with other EB families,” Josie writes.
     
  • Another major topic of interest directly impacting EB patients and their families are wound dressings. So we asked our community to chime in with what criteria they use when selecting dressings. Julieann Morabito wrote that she prefers to stay away from dressings with any potential to stick and suggests checking that the dressing provides “enough cushion to keep the wound from ‘screaming.’ ” She also takes into account how well the dressing absorbs. Jamie Gooch concurred that a dressing’s ability to be non-sticking on the wound or around the wound was important, as well as comfort.
     
  • In August, we asked our EB Resource members, if you could create your own starter kit for EB families, what would you include? Mirandy Donley rightly noted that the different types of EB may mean different needs, but in general, among her items, she would include a plastic box for soaking feet and hands, instant ice packs, gauze, bottled water, healing ointment, clean socks, and caster oil, among other things. Renee Fulton agrees that a soaking tub can be helpful and also adds “and a hug.” Maggie Cervera-Escobar also feels some of the most valuable tools new parents can use are “lots of patience and love.”

Have you joined the dialogue yet in our Facebook community? There are so many interesting conversations taking place there every day. We hope to hear from you soon, too.

Sources:
EB Resource Community

Related Posts:
EB & Educating the Rest of the Family
Doing Our Part: What Can You Share?
Support Networks vs. Support Groups

Kudos to These EB Champions

As you already know, one of the greatest challenges for the EB community is getting the word out about epidermolysis bullosa, so when well-known celebrities or a group of people committed to the cause step in to make something happen, we think it’s a beautiful thing. Here is a great trio that has done just that.

  • Patti Hansen
    Remember ’70s supermodel and wife to Rolling Stones rock legend Keith Richards? We were so excited to hear that Patti Hansen’s recently unveiled talent of making designer handbags for Hung on U was attracting Hollywood attention. But we were ecstatic to learn she was using all of the buzz to partner with EBMRF to raise funds for EB medical research by donating 15 celebrity-customized Hung on U bags for an online auction hosted by Charity Buzz. We say that embracing your style and fashion while supporting a great cause is a win-win. Thank you, Patti!
  • The Butterfly Fund
    This organization, led by founder and executive director Laurie Sterner, initially began with the purpose of raising awareness about EB and the need for support for those who suffer from the disease. Since then, the organization has grown to include support for children diagnosed with any serious life-altering disease or condition. For all Butterfly Fund events, all proceeds go directly to those families being supported, with no paid employees among the group’s team of supporters and volunteers. With food, housing, clothing, care or financial assistance, EB families are helped directly through The Butterfly Fund. This December, the group hosts its invitation-only gala, the 3rd Annual Butterfly Ball in Sonoma, CA. (For details, visit www.sonomabutterflyball.com.) We applaud The Butterfly Fund for all that it does to continue raising awareness and funding for EB families.
     
  • Delta Tau Delta Fraternity at Southeastern Louisiana University
    When we learned in late September about a fraternity chapter in Louisiana that had embraced the cause of EB Awareness as one of its missions, we knew we had EB champions in our midst! Fraternity president Brandon Colletti and his brother members of the Delta Tau Delta Fraternity of Southeastern Louisiana University launched a fierce campaign to raise funds and public support for the Roth family of Ponchatoula, LA, and specifically two-year-old Tripp, who has EB. Once the fraternity brothers learned of the expensive day-to-day costs for EB families, they set out to promote their popular fundraisers, known as Delts-do-a-Thousand, with not one, but two campaigns to raise support for Tripp and his family. The group led a three-day fundraiser by shaking cans and riding an exercise bike to collect spare change—in the spirit that every little bit of help matters. And we say, yes, it does. Kudos, Delta Tau Delta, for reminding us!
     

Sources:
“Patti Hansen’s Hung on U Line Debuts at Barneys New York” (LA Times)
Hung on U
The Butterfly Fund
“Fraternity Helps Child with Rare Disease” (The Lion’s Roar, Southeastern Louisiana University)

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