EB Dads We Celebrate

This is a month where families everywhere celebrate “dear old dad.” Many families honored these revered men this past Sunday with special Father’s Day meals, gifts and activities. We wanted to take a few moments this month to use our semi-regular EB Champions feature to celebrate some fathers in the EB community who we think deserve a little extra recognition for the work they do to support EB patients and their families year-round. There are many great parents we could honor every week – these are merely a trio of awesome dads out there, and we thank each of you this week for all that you do.

  • Brett Kopelan
    Brett Kopelan serves as executive director for DebRA of America and is focused every day on how to improve the lives and impact the futures of EB families everywhere, and has been for many years, previously serving on the organization’s Board of Trustees. While he and his team may have set out to help EB families face the day-to-day challenges and address long-term issues affecting those diagnosed with EB, he does have a personal mission at stake, too, as a father to a little girl diagnosed with RDEB.
     
  • Tim Ringgold
    Tim heads up Pioneering Unique Cures for Kids (PUCK), a parent-driven initiative of Children's Cancer Research Fund, who have made it their collective mission as noted on their website, through funding and advocating for cutting edge research to help “transform rare, incurable childhood diseases into curable ones, one disease at a time.” Tim is frequently a guest speaker in the community about the organization and EB advocate, working tirelessly to educate others about the disease.
     
  • Alex Silver
    Not only is Alex co-founder with wife Jamie of the Jackson Gabriel Silver Foundation named for his five-year-old son diagnosed with EB at birth, but he continues to be a major champion of clinical research support efforts. He even testified before the Senate Committee on Health, Education, Labor and Pensions back in summer 2010 in an effort to attract greater attention and focus on the treatment of rare diseases.

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!

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

We “Heart” These EB Champions

Valentine’s Day may have come and gone, but we thought it was the perfect time to celebrate what some of the voices in the EB community are doing to speak up and be heard at a local, national, or global level. We love what these wonderful EB champions are doing to try to make a difference in the lives of patients and their families by getting the word out about a disease that many in the medical and scientific communities are still not talking about. Let them inspire you to determine what you can do to join in with your voice.

  • PUCK, Pioneering Unique Cures for Kids
    After nine-month-old daughter Sara, who had been scheduled to take part in a University of Minnesota bone marrow transplant research trial, died from complications of the disease before participating, her parents Jay and Lonni Moreland continued to stay involved in the study. Upon learning that five of the study’s seven participants were showing signs of improvement, the couple relocated from California to Woodbury, MN to be closer to the University’s research team and launched the foundation PUCK, Pioneering Unique Cures for Kids, to benefit disease research for EB and other rare diseases.
  • Tyler Jones
    Last fall, Tyler Jones, a 14-year-old from Murray, KY born with EB, was inspired by National EB Awareness Week to create his own opportunity to educate others about epidermolysis bullosa. He and his mom, Rachelle held a campaign to sell purple EB bracelets to raise money for DebRA at the Nov. 5 Murray High School football playoff game and shared information about EB with others. Tyler’s just one example of some of our younger voices in the EB community speaking up to make a difference.
  • Timothy Ringgold
    If you’ve been reading about EB for some time, you’ve most likely come across Timothy Ringgold’s name. Author of Bella’s Blessings and father to Annabella, its inspiration who died just shy of seventeen months old following complications from a bone marrow transplant as part of the same University of Minnesota research that inspired PUCK, Ringgold has been an active speaker and fundraiser in the EB community for a while. Through his regular blogs at the Bella’s Blessings daily blog and a Team Bella video series posted on YouTube, the mourning father has been very open and candid in sharing his feelings about the loss of his daughter and has channeled that grief into encouragement of others to raise funding for EB research and to share their stories.

 

Sources:

“Woodbury Family Hopeful about Disease Research” (Woodbury Bulletin)

“Local Youth Inspiration to Those Around Him” (Murray Ledger & Times)

Timothy Ringgold YouTube Channel

Bella’s Blessings

Related Posts:

Resolve to Speak Up for EB Families

Thankful for These EB Voices

More EB Champions Worth Celebrating

Celebrating EB Family Advocates & Supporters