45 Days to EB Awareness Week

It’s hard to believe that EB Awareness Week is just around the corner, only 45 days away.

For those of you who are already deep into the planning stages of your fundraisers or awareness events in your community, please reach out to others here in the EB Resource forum or at your preferred EB organization for any guidance or support. Some groups, like DebRA of America for example, have pages on their website devoted to carrying out a fundraiser in their organization’s name, and other groups may offer helpful kits or fundraiser advice. You just have to ask to see what resources may be available to help make your event a success.

As this very relevant nationally designated week approaches, we wanted to take this time to remind you of various ways you can make a difference for EB Awareness Week, whether or not you’re planning or hosting your own event.

  • Many network TV affiliates and metropolitan newspapers are not likely to be familiar with EB Awareness Week. Reach out to local broadcasters and newspapers columnists in the community. Shed light on the subject with people who have a forum to share with others, and you just might inspire them to start talking about it through their own channels.
     
  • If you have a child or have close family or friends that are enrolled in an area school, consider reaching out to the school to make them aware of this still rarely known disease and what EB Awareness Week is all about, and encourage them to get involved in some way as a school or class project.
     
  • Spread the word about EB Awareness week to members of the clubs, networking organizations and other groups that you associate with. Many of these will be looking for opportunities to take part in some kind of community project or fundraiser campaign. Put a face to the disease by sharing some of the stories available on blogs like ours or at organization websites including DebRA’s.
     
  • Reach out to good friends who own area businesses and let them know about EB Awareness Week including restaurateurs, shop owners and service providers, and encourage them to do something on their own to raise funds and lend a hand. For example, you might suggest to a local restaurant owner that they have a particular night where a portion of proceeds benefits one of the EB-focused organizations or if there is an EB family in the vicinity, where those proceeds go directly to them.
     
  • Sometimes, I’m sure it can feel like you have 101 different social media accounts to worry about but in the case of EB Awareness Week, this is your chance to put whatever ones you have to work. Use all of the different platforms you’re involved with – whether it’s LinkedIn, Pinterest, MySpace or the more prevalent ones such as Google+, Facebook and Twitter – and take that week to introduce facts about EB, statistics, important organizations or studies people should know about. This can be a great time to use social media as a tool that can truly educate and inspire. And it’s already in your hands!

Q & A with EB Advocate Kristina Wyatt, Part II

Last week, we shared part I of our interview with graphic designer Kristina Wyatt and learned how she was introduced to epidermolysis bullosa and what inspired her to launch her website EBAwareness.com and its evolving advocacy arm, The Butterfly Network. This week, we continue with part II and find out how she is collaborating with other EB advocates to make a difference.

 

EB Resource (EBR): You’ve done some collaborating with other advocates in the EB community, including Christie Zink. What have been some of the ways you’ve been able to effectively combine talents and resources to support EB patients and their families?

Kristina Wyatt (Kristina): Working with Christie has been a blessing. The very first thing Christie approached me with was for the I Refuse Campaign, in which I developed the designs and branding for many of her materials, such as the iconic logos on the I Refuse t-shirt and the portrait of Bella Ringgold, daughter of PUCK director, Tim Ringgold.

EBR: From your own communication with families and organizations that are focused on EB research and supporting EB families, where do you see there being the greatest need in the EB community? Financial support? Research? Education? Some other resources?

Kristina: Undoubtedly, the EB community could benefit from an increase of any of these resources. I personally believe that an increase in awareness would be the best start, and I am hoping that The Butterfly Network will assist in this goal. I think the effect would be like a chain reaction: the more people spreading awareness, the more people become "in the know" about the Worst Disease You Never Heard Of … the more people who know, the more who are moved to act … the more people who act, the more awareness and potential funds to be raised for research. The disease may be rare, but the idea and the knowledge need not be rare, as well.

EBR: What do you personally take away from your work at EBAwareness.com and the Facebook page?

Kristina: When I started devoting myself to working with the EB community, I honestly believed there wasn’t much I could do. I wasn’t rich enough to donate substantial amount of money to research, I wasn’t famous enough to move people to action – I was just this working mom trying to make ends meet. I realize now, with what I have done in a short amount of time, that everything helps. If you can do something, do it, no matter what it is, because it will affect and influence somebody, somewhere. The fact that I have been able to help – in any definition of the word – people with my work, I take away a sense of accomplishment and a sense of worth. My goal in life was to find something I love to do and be happy doing it, not just working to make ends meet. I care so much about each person in the EB community, so in doing the things I do, I know I have reached my goal.

EBR: If somebody wants to get involved with EBAwareness.com, what are the ways they can do so?

Kristina: As I mentioned before, EBAwareness.com will be evolving into the advocacy program, The Butterfly Network. Once it is launched, we will need all the advocates we can get! Look for announcements in The Butterfly Network Facebook community for more details on how to become part of the movement and what you can do to get involved. Join the movement, share your stories, and spread awareness!

EBR: What kind of impact has learning about EB and getting to know the families had on your perspectives on motherhood and life in general?

Kristina: I have always considered myself a strong person, and an even stronger mother. However, any strength I have could never compare to the strength I see in every EB patient and every parent blessed with a butterfly. I have them all to thank for giving me this selfless purpose, and for leading me to make my risky decision of becoming a stay-at-home mom. I have them to thank for the realization that nothing else is more important than my family.

EBR: If you could share any message with the general public about EB, what do you feel is most important for them to know to truly understand what this community faces on a daily basis?

Kristina: The more you care, the more hope is given to all those who suffer from EB. Their day-to-day battles create a life that rarely stops, and pain and heartache is their normalcy. We need to come together and give the time they do not have. We need to offer the same strength they have just to live. Our actions can influence the hope that there may be an end to their suffering.

Q & A with EB Advocate Kristina Wyatt, Part I

We were excited when we first discovered the website EBAwareness.com and its beautiful imagery: the symbolism of the bright, gentle butterflies, the special bond between parent and child, and the presence of colorful awareness ribbons and words of support throughout. We began learning of the different ways the website’s creator, Kristina Wyatt, was advocating for EB families by creating rich, vivid graphics to spread the word and educate others. She uses attention-getting imagery about epidermolysis bullosa and supports direct efforts to raise funds for patients, families, and clinical research efforts.

Recently, we reached out to Kristina to find out more about what she’s doing and how she was first introduced to the EB community. We will be featuring excerpts from this conversation for the next two weeks.

 

EB Resource (EBR): You are a wife and mother of three, an IT professional, a student, a mommy blogger, and now an EB advocate. That’s a lot on your plate. What is a typical day like for you?

Kristina Wyatt (Kristina): I like to think of my typical day as a structured whirlwind – once it starts, there is no stopping! Actually, there are some big changes for me on the horizon. Originally I devoted 40 hours a week in the office plus countless hours being on-call for technical support (a 24/7 responsibility).  On top of my hectic work schedule that ate up the majority of my day, I attend school online to complete my bachelor’s, which I completed in the hours after my children were tucked into bed. Once my schoolwork was out of the way, I would stay up into the early hours of the morning to devote time to my EB work, and whatever I couldn’t finish the night before, I would work on during my lunch break at work. Wash, rinse, repeat! My husband and I just recently have decided to have me become a stay-at-home mom (for now) and work on my freelance web, graphics, marketing, and branding career. In the meantime, I will be adding one more to the litter: my nephew, whom I will take into my care. I am incredibly excited to give more time not only to my family, but to the cause nearest to my heart as well.

EBR: You work in the IT world, but you also have a talent for web design and graphics. When did you discover an interest in designing graphics and illustration?

Kristina: When I was 14 years old, I was slated with a book report assignment at school where we as students were supposed to "think outside the box" when presenting our book report. It was then that I made my first Geocities website, discussing the intricacies of the book Little Women (or as much as my 14-year-old mind could decipher). I am pretty sure I spent more time perfecting the website than reading the book! From there, my passion for web design grew infinitely, until I was designing a website for anyone who would have one. I now offer web, graphics, marketing, and branding design and development services.

EBR: How did you first learn about epidermolysis bullosa?

Kristina: An article caught my attention years ago that would forever engrave the acronym “E.B.” into my mind. I can’t remember the title or author so much as the content – I will never forget the overwhelming sadness that came over me reading those words, seeing the images of the wounds and bandages … It led me to find online journals such as those on CaringBridge and other resources.

EBR: What was it that inspired you to start the EBAwareness.com website, and how long ago did you launch it?

Kristina: When I first discovered that something so horrific as EB existed, the images would not leave my mind, and I didn’t want them to. Every time I read something new, saw a new picture, etc., I remembered the emotions it triggered and I wanted so desperately to help. So I started talking with friends, family, and co-workers – whenever an opportune moment would arise, I would mention EB and ask if they had ever heard of it. No one ever had, and it broke my heart. But at the time, I was working odd hours, just struggling to support my growing family and barely breaking even, and I felt that there was nothing I could do. How could I contribute if I couldn’t even afford to stock my refrigerator, let alone donate to the cause?

Finally, I came across Courtney Roth’s blog. I couldn’t tell you the mass amount of time I spent immersing myself into her blog. I cried and prayed and laughed with Courtney, then prayed some more. The grace that Courtney carried with her through everything, and the indescribable gift that Tripp was and continues to be, was what opened my eyes. I realized I could do more than open my wallet. Thankfully by then, I was into my career and feeling a bit more successful, so I could fund small things as I sprang into action. I realized that you can only raise so much money from so many people, and the key was to make more people aware. It’s not about the money, either (though we need more of that too!) – the more people that are aware, the more that will care, and caring brings the hope that these families need.

EBR: What types of web and graphic work have you been able to do so far to support EB causes through the site?

Kristina: I have been fortunate enough to be enlisted by individuals, fledgling foundations, and larger foundations, as well for various projects. My work ranges from full website design and development, blog development, branding packages, and marketing materials to include anything that can be used as advertising.  I also do smaller graphics, such as Facebook banners, inspiring images that can be shared across social media, etc.

My favorite works are the Tributes. Either by request or by my own inspiration, I create portraits of EB patients in their honor and as gifts to the parents. I aim to provide these services to EB patients and families for free. Creating personal blogs and social network graphics are options I like to offer to help them gain their own voice and share their stories. I am working to evolve EBAwareness.com into something that centralizes around this – all for the sake of spreading awareness. If any patient or parent of a child with EB would like to contact me about this, they are welcome and encouraged to do so.

EBR: What are your main objectives with the website?  How would you like to see EBAwareness.com get more involved in supporting the EB community in the future?

Kristina: The site started as my endeavor to give more people a voice as well as to offer what little I could to show my support.  It has since evolved into a marketing vessel for EB Awareness, though I knew early on I wanted more for the site than simply just pretty graphics. The future for EBAwareness is going to be focused on bringing together patients and non-patients alike and giving them the ability to unify in their fight for a cure. I have founded an organization, The Butterfly Network, which currently involves a small committee of advocates. EBAwareness.com and The Butterfly Network will be a cohesive advocacy program and community that will be a hub for all to become part of the fight and part of the cure. There is so much that the program and community will offer, and let me tell you – it’s going to be big!

 

Next week, Kristina talks about her collaborative efforts within the EB community and how others can get involved at EBAwareness.com.

Keys to Successful Fundraising, Part II

Last month, I blogged about tips I’ve gathered along the way while coordinating the Butterfly Benefit Fashion Show and Luncheon. This month, I wanted to offer some general advice for fundraisers and EB Awareness events. I encourage you to look for new ways to reach out to people and share information about EB. I find that once people are introduced to EB, they usually want to know more about what they can do to support those affected.

  • Know what you want to accomplish before you start planning. How large do you really want your event to be? Are you appealing to the masses to simply attend and be present? Or are you planning an event that would benefit from a smaller number of people? Sometimes events that attract a more defined group that is interested in hearing from speakers and learning about the issue can lead to those individuals hatching even more creative ideas to raise EB awareness or dollars as they talk among themselves.
     
  • Make certain your event suits your goals and vision. You may enjoy golf and want to coordinate your own golf event, but know in advance that a golf tournament can be a truly ambitious undertaking, and often so much money must be invested into putting on the event that the organizations do not benefit as much financially as with a smaller function. If you can get a golf country club to donate the course’s greens fees, go for it. But if raising funds is your main goal, consider a walk or an auction that has the potential to raise a lot of money and typically costs far less. Just make sure if you’re hosting a walk/run that you notify your city beforehand should you need police to block off any streets for participants.
     
  • Find a local connection to EB before reaching out to area media outlets. It can sometimes be challenging to get the word out about your event, because there may not be an EB family in your community. You should first consider reaching out to these families in a nearby city or elsewhere in the state to see if they’d be willing to be involved and attend the event. You may also ask them if they would be open to talking with local media who may want to ask them about life with EB. Once you’ve been able to confirm their interest in taking part, you have a great foundation to appeal to local TV stations and newspapers that tie an otherwise unknown disease to your upcoming event and a story source.
     
  • Get local vendors involved in your event. It’s always smart to check with larger brands or organizations to see if they would like to lend their support as a sponsor, but whenever possible, try to offer an opportunity for smaller businesses in the community, too, such as vendor tables, food providers or sponsors of some valuable parts of the event such as printing, promotion, goody bags and raffle items. These businesses are part of your community and want to be connected with the people you hope to draw to your event, and most local boutiques and stores can really use the media coverage by being a part of something bigger than themselves. On a related note, regarding sponsors …
     
  • Be sure to reach out to any of the national EB-focused vendors about getting involved, such as Hollister Wound Care and National Rehab. Your event ties with their mission of supporting EB families while providing a valuable resource for you during planning. You might even approach them about whether they would be willing to match funds raised up to a pre-set limit. In this way, you can transform a smaller $1,500-$2,000 fundraiser into a much bigger deal for the nonprofit you’ve selected.
     
  • Always look for new, innovative ways to raise interest and draw people to your event. For example, next year, my goal is to incorporate QR code technology so that people shopping at boutiques participating in the fashion show can buy tickets to the event right from those stores, using the customers' smartphones.
     
  • Try staying away from collecting supplies and stick with raising funds instead. Because so little is known about EB by most people, if you were to host a medical supplies or bandages drive, you are likely to get mostly traditional bandaging products, such as Band-Aids and Neosporin, which are helpful for other families, but due to very specific care needs, may not be appropriate for an EB family. So unless you are very specific with your drive requests, you may wish to avoid hosting this type of event and focus instead of awareness or research funding. And never underestimate the value and power of holding an awareness event. Educating the public is just as critical as raising research funds.
     
  • Share information about your event with women’s social and business networking groups in the area. We moms know firsthand that if you want to get something done, get a group of mothers together and they’ll make it happen! For many women’s groups, there may be a philanthropic element to the group, so your event can offer them an opportunity to give back to the community or a cause they can stand behind. Also, groups sometimes like to carry out their own internal fundraising campaign to support a community event and do so by raising dollars from their members at their monthly meeting or by recruiting volunteers or participants for your event. So spread the word heartily, but especially make certain you reach out to these ladies who care.
     
  • Let the organization for whom you are raising funds know about your event ahead of time. Sometimes groups can help out by promoting it on their website or in e-newsletters. Others may want to send literature or giveaway items. For my past events, DebRA has been really helpful in mailing me pamphlets and EB Awareness bracelets for the event. Some groups have a fundraising information packet or event planning kit that they can send you, too.

Whatever you decide to do, good luck with your event! And don’t forget to keep us in the loop so we can help you spread the word.

Community Contributions

Recently, we blogged about the various gifts people bring to community forums and the resulting roles that those of us participating in these online communities take on – such as a cheerleader, teacher, igniter or fact-checker. However, besides lending your voice to the cause (literally) or contributing in more obvious ways, such as through donating money or supplies or hosting an event to collect these types of resources, there are many other ways that you can contribute to the EB community. Some may be more obvious than others, but we hope that perhaps this starting list happens to inspire you or people you know who have indicated they want to do more.

  • Marketing and publicity
    Do you know anyone who is a professional marketer – perhaps in public relations, advertising or other marketing realms? These individuals often have very creative and strategic minds that could be beneficial to anyone trying to garner interest in a fundraising campaign or plan an event. Don’t be reluctant to reach out to someone you know with these kinds of skills. And if you are someone in that career field and interested in helping out EB families you know, consider tossing your promotional hat into the mix to offer complimentary services or advice.
     
  • Writing and design
    Are you handy with words or a talented web designer? Why not offer your support to those who may wish to write a regular blog, pen a book or set up a new blog page? We were overjoyed to learn about Kristina Wyatt, a young wife and mother who launched the EB Awareness program through which she offers blog page design services to those in the EB community wishing to launch a blog page. She also provides assistance to those who may need other EB-themed marketing materials for fundraising and awareness campaigns. Let that inspire any of our freelance writers and artists out there to devise what they can do!
     
  • Cooking and baking
    Are you a whiz in the kitchen? Perhaps there would be an opportunity to develop a cookbook and donate some or all proceeds to your favorite organization. If there are local events being held, such as an awareness walk, auction or gala of some kind, can you offer your services to pitch in baked goods or side dishes? Or maybe you can donate your culinary services for a special auction prize package?
     
  • Art or photography
    If you’re particularly skilled in drawing or painting, what if you were to offer your services to provide free sketches or paintings to EB families? And photographers, there are plenty of services you could extend to those families who may feel like a traditional photography studio will not be sensitive to their special needs and circumstances when setting up a group photo shoot. How can you alleviate this concern and share both your skills and compassion behind the lens?
     
  • Financial consulting and accounting
    For many EB patients and their families, the monthly cost of the disease can take a huge toll on morale and any potential savings. If you are a licensed financial consultant, perhaps you could offer a free consultation or two to discuss strategies for addressing financial challenges. If you are a bookkeeper or certified public accountant, consider offering your services to put together a debt or medical bill repayment plan or provide assistance to get debts reduced with lenders or medical institutions.

Have you been thinking about yourself or someone else you know who has expressed an interest in getting more involved to help out EBMRF, DebRA, the Jackson Gabriel Silver Foundation or one of the other many relevant and valuable EB-focused organizations? What can any of you do to lend a hand in your own unique way? We want to hear other ideas from you, as well!

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

One School Puts the “Fun” in Fundraising

From time to time, we like to share feedback from successful fundraisers and the people behind those events, to offer insight on how to approach planning such a fundraiser should you wish to initiate something similar in your school or community.

004761-DSC03006_GamingForEB2 Recently, a first-grade class at St. Anne Catholic School in Tomball, Texas, took an opportunity to create their own service project to recognize and honor one of their fellow students through an innovative fundraiser called “Gaming for EB.” Students were asked to find sponsors so they could play video games (win) so they might raise awareness and funds for DebRA (win) and show their classmate Daniel who has EB that they care about him and will do whatever possible to help find a cure for EB (win!) A win-win-win for everybody… The result: kids had fun, parents had fun, faculty had fun and DebRA has funds soon to be on their way. Hear how it all came about from Elaina, one of the service project’s coordinators and first-grade room moms. (At the request of the classroom mom and Daniel’s family, we are not including last names in this piece.)

Could this be an event your school or community would be receptive to supporting? Find out what was involved to put all of it together in less than two months’ time!

EB Resource (EBR): Can you explain how the idea for this service project first came about?

Elaina: Each grade level at St. Anne is asked to do a service project for their community. We figured what better way for the first graders to have a great understanding of their service project than to help their own classmate? Daniel has been in class with the same kids for two years and they know and love him dearly. Even though they know they need to be careful because he has delicate skin, he is very much one of the group. By Gaming for EB, they would know and understand who they were helping and also see before their eyes what kindness does.

EBR: How long did it take to plan the whole event?

Elaina: We began planning in mid-September 2010, and the event was held November 10, 2010.

EBR: How many first graders took part in the gaming, and was Daniel among them?

Elaina: We had about 98% participation from the first graders – for two classes, 44 children. The only ones who could not make it were children who had prior engagements that could not be missed. We opened the event to all first graders from St. Anne and their siblings so the total number there was 75! Daniel was definitely among the group, along with his own siblings.

EBR: So how did Gaming for EB Work – did the kids raise funds through their gaming? Were players sponsored?

Elaina: All children were asked to pay a "cover charge to game” of $5. Along with that, each first grader was asked (voluntarily) to004760-DSC03025_GamingForEB1 be sponsored by one or two close family members or friends. Each child was given 30 minutes to play inside the gaming truck from Curbgames.com. While the others were waiting, CiCi’s Pizza sponsored pizza for the kids to snack on and a local Tomball drilling company donated a cotton candy machine. Along with that, we had other games to play like hopscotch, ring toss (with DebRA bracelets that they got to take home), beanbag toss, hula hoops and a big field to play kickball.

EBR: How much money was raised altogether?

Elaina: At this time, we have raised right around $2,000 with money still coming in. We had our event posted in the local Tomball Tribune, the church bulletin and the St. Anne Newsletter. Many generous people, who did not even have a part in the gaming event, stepped forward to sponsor Daniel.

EBR: What kind of feedback did you get from the kids after the event? And how about feedback from the faculty and parents?

Elaina: The kids had a blast and so did the parents. The event lasted two hours, and we were able to get everyone involved. Some of the parents helped with the extra games, passed out pizza and cotton candy, gathered the children for their turn in the Curbgames.com truck, and some parents even gamed a little with their children. The faculty was very supportive, from helping with handouts and taking pictures at the event, to sponsoring Daniel to play.

EBR: What about Daniel and his family – what kind of thoughts did they share about the event?

Elaina: The family said they had a great time and were so glad to have this event in Daniel’s honor. Daniel’s mother was a huge help throughout the whole planning process, in addition to helping during the event.

EBR: Has there been talk about making this an annual tradition?

Elaina: We have definitely talked about it. What a great way to bring awareness to the community and for the children to actually know who they are helping. First graders get that concept!

EBR: What did being involved in this event mean to you personally?

Elaina: It was amazing to see the event come together and to witness the unbelievable support from the parents, the school and throughout the community. Everyone was so willing to help and donate, whether it was equipment, games, food, and/or money! Every step of the way, there was a small sign (and sometimes a very big sign), letting us know we were doing the right thing, in honor of Daniel, in God’s love.

Sources:

St. Anne Catholic School (Tomball, TX)

Related Posts:

Advice for Planning Your EB Fundraiser Walk, Part II

Advice for Planning Your EB Fundraiser Walk, Part I

Even for More Fundraiser Ideas…from You