Year’s End Celebration

We’re just days away from 2012, and we always love using this time to reflect on the good things the current year brought to us – maybe it was new people, a fresh perspective on a subject or added knowledge or activities that helped us learn and grow in some way or another.

What are you celebrating at year’s end? A new job? A victory for the family? Maybe it’s not an obvious piece of “good news” but more about a new understanding or acceptance of something in your life. Peace of mind and resolution are always meaningful causes to celebrate in our book!

So we want to take this time to say thank you to everybody who in some way has contributed to EB Resource this year– whether it was contributing a personal story or information for one of our blogs, becoming an active part of the Facebook community or re-tweeting our updates on Twitter. Let’s toast the old year as we usher in a new one.

  • More community growth. We watched our EB Resource Facebook community grow yet again from nearly 800 members at the start of the year to just under 1,000! Many of you have introduced what we’re doing to friends, family and co-workers who have since friended us, too, and support the community in their own unique way, and for that, we thank you.
     
  • Steady interaction. It’s been so exciting to be a part of a relevant, ongoing conversation that has shown no signs of slowing down, and one with so many caring people lending their voices. Sometimes we launched the topics and other times, members posed important subjects for discussion. This has been an organic process from the start, and we can’t wait to see new ways we’ll connect with one another during the new year.
     
  • More and more voices in the blog community. Each year, we see a growing number of voices join the blogging movement. This is certainly not a new avenue for expression but one that can be particularly timely and critical in our community, with so little information or discussion available in mainstream media about EB. We won’t begin to take credit for encouraging more bloggers to open up their WordPress and Blogger accounts, but we do feel an itsy-bitsy sense of pride that some of our EB Resource Facebook friends are among those who’ve launched these new blogs. So we hope we’ve at least been influential in your decision and will continue to call on others to speak up if they have something to say.
     
  • Even more fundraisers for EB causes. As great organizations like EBMRF, DebRA, the Butterfly Fund, PUCK and others find opportunities to create larger-scale events and campaigns, we are beginning to see more and more families and communities at a grass roots level launch their own community-based awareness events and fundraisers. This is wonderful news, because it starts at the neighborhood level, helping others become familiar with what EB is, what it looks like, what it means for those impacted and how others can help in basic ways to make a difference. So kudos to those who took the leap and launched their own first annual event this year. Keep us in the loop about your second annual events in 2012 so we can help you spread the word!
     
  • The love Tweets. Thank you again, everybody, for re-tweeting and spreading the word during our recent second annual EB Awareness Tweet-a-thon. Hollister Wound Care was able to donate $2,500 to DebRA of America as a result of those who pitched in, taking the time and care to share messages with their own followers. Just think about how many new people were introduced to the topic for the first time because of your interest and energy. We can’t thank you enough!

As you get the funny-looking hats, party horns and champagne flutes ready for the new year, take the time to reflect on your own personal victories and challenges, and where you’re headed. And we’ll look forward to connecting with you in 2012!

Holiday Shopping for EB

The holiday season is here, and we can’t believe how quickly it seemed to arrive. But we didn’t want to let the season sneak by without sharing with the rest of the community some shopping links we’ve learned about that invite consumers to tackle their gift list while benefiting EB families at the same time.

 

 

The following links are provided as a courtesy to the EB Resource community for informational purposes only. None of these links featured here represent any kind of content or product endorsement or warranty by EB Resource.

 

  • For those planning to prepare and mail out cards for the holidays, consider an innovative option that combines celebrity, creativity and a good cause. Tiny Prints offers a line of Celebrity Cards, featuring cards designed by such notable personalities as Jennifer Aniston, Eva Longoria and Zoe Saldana, with proceeds from each sale benefiting the Epidermolysis Bullosa Medical Research Foundation (EBMRF). So the annual tradition of sending out holiday greetings to friends and family members can support EB research at the same time!
     
  • If you were planning to buy a new Kindle this holiday season, consider purchasing it at Amazon.com. By clicking on this specific link, Amazon.com will donate a portion of proceeds from the sale to DebRA of America.
     
  • And here’s another innovative musically tinged way to support EB. Planning on buying a friend or family member an MP3 player for a gift? Download the song “Butterfly Child” by Rob Duskey & Friends at Amazon.com or iTunes onto their new player, and each download supports the artists’ fundraising for EB research.
     
  • Looking to buy some beautiful bling for someone special? EBMRF has a link to Satya Jewelry at its online shop, and DebRA features a beautiful butterfly bracelet as well as a butterfly pin at its website’s merchandise page, with each purchase benefiting their respective referring organizations.
     
  • EBMRF has also partnered with the NuSkin products skin care line, so next time you’re looking for an invigorating skin cream, consider helping EB at the same time with purchases of three of their products (Firewalker, IceDancer and Glacial Marine Mud).

 

These are just a few ideas we have found. Do you know of some others? If so, please share them here with the rest of the community.

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 & Educating the Rest of the Family

When many of us first introduce the concept of epidermolysis bullosa to friends, neighbors and our extended family, they may not be certain how to accept this information or truly understand how this new unfamiliar abbreviation “EB” is going to impact the family. Sometimes uncomfortable, awkward conversations may be necessary to educate those around us so we may build a stronger, more complete and informed support network that our families will need. We offer a few ways to begin doing this.

  • Invite a good friend or family member to accompany you for a doctor’s appointment.
    Allow those closest to you to join you during a care consultation with the doctor or nurse to get a clearer picture of the challenges your family faces and help identify places in the care process where they may possibly offer assistance or resources.
  • Urge family supporters to tune in to other voices about EB.
    Suggest that close friends and family members connect with others on social media networks and blogs to learn about the disease, the latest research and events to benefit research and awareness efforts.
  • Accept assistance wherever offered and make suggestions when friends and family members express an interest to help.
    Open yourself to others’ lending their support in whatever ways they know how. Sometimes it can seem like a vulnerable situation but welcome others’ willingness to help out in the care process or other household tasks or obligations. Often you can guide these helpers to provide specific types of support that would be most practical to your family’s circumstances. Friends offering support are looking to you for guidance on how they can be the most helpful: don’t be afraid to be assertive enough to tell them or to accept their thoughtful offer.
  • Collaborate on a community fundraiser or awareness event.
    Encourage others in your inner circle to get involved with the cause to raise funds for EB research or direct EB patient support, or to join a campaign to draw attention to the subject. By being involved in an effort to educate others, your friends and family will want to learn all that they can to become a valuable resource who can share information with others.
  • Direct them to organizations with resources specifically designed to educate and support patients, families and their communities.
    Groups like DebRA of America, Pioneering Unique Cures for Kids (PUCK), United Survivors with EB, and Epidermolysis Bullosa Medical Research Foundation (EBMRF) serve various roles in the EB community and may offer different pieces of information or opportunities for loved ones to arm themselves with greater knowledge about the disease, current research efforts and patient services available. You also may want to point them to our recent list of 100 helpful links for EB families. It’s by no means a complete list of articles and resources available, but it can be a practical starting point to locate additional information.

For those who have already experienced this, what were some different strategies you used to educate close friends and families about EB and make them an invaluable part of your support network? We’d love to hear from other families.

Source:
Family Center, DebRA of America

Related Posts:
Doing Our Part: What Can You Share?
100 Links for EB Families
Support Networks vs. Support Groups

Resolve to Speak up for EB Families

As we reach the end of the year, we have nothing but gratitude for all of the folks who’ve contributed this past year in the EB Resource community at Facebook. It hasn’t been lost on us that the more people who begin telling their stories, the more others are inspired to do so, too. Each time, a mom shares details about her experiences with doctors, a patient offers pain management strategies or coping mechanisms, or a father offers fundraising ideas or planning tips, we plant the seed for one more person, one more family, to take action and begin to spread the word about EB.

So we won’t go on and on with a long blog here today because we’ve said it countless times before. But we do want to urge each and every EB patient or family member who may be reading this blog to think about how in the new year, he or she can make a difference to support other families facing EB – some for the very first time and others who find themselves facing new challenges or entering new stages of the journey. If you’ve been there before, tell us what you’ve learned, what you would have done differently, share insight with others the way you may have wished for it yourself as you began your own journey.

Sites like DebRA of America, EB Friends and EBMRF, among others, offer specific ideas for how you can begin to be a voice for EB and tell your story, not only for the purpose of showing support for patients and families like yours but to reach out to those who are unfamiliar with EB and alert them to the need for further trials, research dollars, compassion and community support. We ourselves have offered ideas for how to become more vocal about EB in some of our blogs such as this one.

Submit an editorial to the local newspaper, volunteer to speak at a civic group’s monthly breakfast, do a presentation about EB for your son or daughter’s class, host a coffee with your neighbors…but speak up in some way. Perhaps you want to start here in our forum. We’d welcome your stories and would love to hear from you. Just email me at leslie.rader@hollisterwoundcare.com.

The important thing is to join others to become a voice for EB in this new year. Resolve to make a difference in your own way – big or small, loud or not – we welcome you to join us on our mission to help spread awareness about EB and build a conversation on the subject in our schools, in the business community and among our various leaders at the local, state and national levels.

Getting people to talk about EB starts with a single voice…will that voice be you?

Sources:

DebRA of America

EB Friends

Epidermolysis Bullosa Medical Research Foundation (EBMRF)

Related Posts:

Thankful for These EB Voices

Sharing Our EB Story: A Mother Reflects on Pregnancy & EB

More EB Champions Worth Celebrating

Thankful for These EB Voices

Every once in a while, we like to extend a special thank you and kudos to those who speak up about EB and help raise awareness and research funding for EB-focused organizations. This month, we’ve got a quartet of special people making a difference in their own unique way and not letting personal challenges stop them from their mission.

If you have someone to recommend, let us know by emailing me at leslie.rader@hollisterwoundcare.com. And remember: nothing speaks more loudly than sharing your own story, something we always welcome and encourage in the EB Resource community. We look forward to hearing your stories and suggestions!

Darren Coles

We recently learned about Darren Coles in an article in his hometown newspaper, The Central Virginian. As a 38-year-old with EB, Darren says he wanted to do something to raise awareness, so what better way than starting his own foundation. Darren was active throughout his middle school and high school years playing organized sports but always hid his disease from his teammates. Now, he is speaking openly about the disease and getting the word out through his new non-profit, which kicked off in late November with a gospel benefit concert at a local church. To read more about Darren and what he’s planning for his foundation, read the full article here.

Dawn M. Hinterberger

One of the most difficult things to do is share your own story about EB and how it’s impacted you personally, both physically and emotionally. Recently, Dawn Hinterberger, a former teacher and medical technologist from Angola, New York, shared details of life with EB in an op-ed column for her Buffalo newspaper– what every touch, every wound, every blister means to someone who lives with this disease every day. Dawn, who’s 40 and suffers from DDEB, pleads to readers to understand its prevalence, citing more occurrences of EB than cystic fibrosis, and urges them to learn more at the DebRA website. Through poignant pieces like this one from Dawn and others, the voices of EB can be heard and reach across a country still mostly unfamiliar with the disease. Would you have the courage to do what Dawn did? Read her full editorial here.

Courtney Cox and David Arquette

They’ve certainly been the subject of much media coverage lately when news of their recent marital separation reached the press. But their dedication to the Epidermolysis Bullosa Medical Research Fund (EBMRF) has been consistent since day one, and recently they demonstrated that commitment to the organization by making their first public appearance together since the announcement of their split at a fundraiser. Their sighting at the Old Navy Rock and EBowl has lent itself to numerous headlines around the globe speculating about the two’s current status but also identifying the cause, organization and purpose of the event, bringing wide-spanning attention to EB in the process. Kudos to this dedicated duo for putting aside any personal differences to come together for a cause in which they believe so strongly. To learn more about EBMRF, visit the group’s website at www.ebkids.org.

Sources:

TheCentralVirginian.com

BuffaloNews.com

Tonic.com

Related Posts:

More EB Champions Worth Celebrating

A Story We Must Share

Celebrating EB Family Advocates and Supporters

Advice for Planning Your Own EB Fundraiser Walk, Part II

Last week, we shared event planning tips from Kristy and David Kissell, who coordinate the Walk for EB each year in Cincinnati to raise EB awareness and funds for EBMRF. This week, the parents of 3-year-old Carson Kissell who inspired the walk share helpful advice for gathering the interest parties and publicity necessary to make such an event successful.

EB Resource (EBR): What’s been your approach for getting vendors on board to donate food or drink or other items for race participants or spectators?

Kristy and David Kissell (The Kissells): Using personal connections with vendors and businesses is the first step, and normally, most successful when asking for a donation. Our next option is by sending “gift-in-kind” donation letters and following up and reaching out to grocery stores, caterers, drink companies, and others.

EBR: What channels do you go through to promote the event for getting participants, vendors and spectators on board?

The Kissells: Direct mail (post cards, flyers, etc.) but this may not be possible the first year since the mailing list is built from the registration info from the walk. We also do news releases for local media like newspapers and television and radio stations; announcements in local church bulletins; promotion on the website and Facebook page; and posters/flyers at family and committee members’ workplaces, schools, etc.

EBR: What do you charge participants to take part in the walk and what’s your donation goal between entry fees and other donations earned for the event each year?

The Kissells: There is no charge or fee to participate in the Walk. We promote that there is no cost to participate, but donations will be accepted to benefit the EB Medical Research Foundation.

EBR: Are there any other activities you’ve included to raise additional funds at the event?

The Kissells: We’ve had a raffle for Cincinnati Reds tickets and a split-the-pot fundraiser. Since we invite donations to be made, we try to limit the extra solicitation activities at the walk.

EBR: What kind of results have you achieved with the Walk for EB so far?

The Kissells: In our first three years, we have raised just over $50,000 through the walk – we do not set an official goal each year. Our committee is happy with whatever we can do each year.

Sources:

Walk for EB Website

Walk for EB Facebook Page

Related Posts:

Even More Fundraiser Ideas…from You!

Planning Your EB Awareness Week Fundraiser

Advice for Planning Your Own EB Fundraiser Walk, Part I

We’ve seen several folks inquire in the EB Resource forum about how to coordinate and launch an EB walk, so we decided to go right to someone who would know: a family who launched their own fundraiser walk three years ago and have been hosting it annually ever since, Kristy and David Kissell of Cincinnati, Ohio, parents of 3-year-old Carson Kissell and founders of the Walk for EB, which benefits EBMRF. We’ll be featuring some of their very helpful advice in both this week’s and next week’s blogs and hope it inspires you and your family to take action and launch your own event!

EB Resource (EBR): How many other people work with you to plan or put on the event each year?

Kristy and David Kissell (The Kissells): A committee made up of 10-15 people to help support the event, which meets a couple times before the event to pull it off. And friends of our family who help the day of the walk with registration, booths, set-up, tear-down, raffles, etc.

EBR: So how far ahead of time do you begin planning each year?

The Kissells: Seven months in advance of the walk (once a month) and as time gets closer we meet more frequently (every other week) the month before our walk.

EBR: How did you go about selecting and reserving a location for an outdoor event like that?

The Kissells: We looked for a park with a walking path that was at least one mile and a good location that was easy to find and close to the highway and main roads. A park with a shelter, picnic tables and some type of kids’ area/playground is also good. And for reserving the park, we contacted the Township where the park was located and went through their process.

EBR: What people do you reach out to in your city or neighborhood to get involvement or permission related to the walk?

The Kissells: Park officials to receive permission for the use of the park and Cincinnati Children’s Hospital EB Center.

EBR: Can you take us through the main steps of your event planning process for the Walk for EB. What’s your general timeline for completing the steps in time for your event held in the spring?

The Kissells: Determine the location for the walk (a park, recreation area, etc.) in September. We use a local park with a one-mile walking path. In October, hold an initial organizational meeting and assign chairs to various sub-committees including financial accounting; database management; event marketing and PR; day of walk set-up and clean-up; registration; hospitality/food, safety (such as fire/EMS onsite, liability/release forms, etc.); information tent (for t-shirts, EB resources, etc.); and photos. Tasks and assignments are established within each sub-committee along with person or persons responsible and organizational meetings are held monthly starting in January through May with the walk held in early May. Then, “Save the Date” postcards are sent in January and walk flyers with pre-registration forms are sent in March. We do a pre-walk “walk-through” at the park in April, host the walk in May and send thank-you letters and donation acknowledgement in June.

Next week, the Kissells share pointers for how to recruit vendors, sponsors and participants for your walk and get the right exposure from your promotional efforts. If you’ve been involved in planning your own fundraiser event and have tips to offer, feel free to share them here.

Sources:

Walk for EB Website

Walk for EB Facebook Page

Related Posts:

Even More Fundraiser Ideas…from You!

Planning Your EB Awareness Week Fundraiser

A Story We Must Share