Last week was a very busy week in the EB community. Many of the final springtime fundraisers took place including Jogging for Jonah, Butterfly Wishes for Ellie, Love for Lucas and the sixth annual Walk for EB in Cincinnati. As summer approaches, we thought it would be a good time to highlight those events that we have learned about taking place later this year, so far, and hopefully inspire others to coordinate something in their own communities.

If you hear about any other events or are planning one yourself, please send us all of the details. You can email me at leslie.rader@hollisterwoundcare.com. We’ll do our part to help spread the word here at the blog and via Twitter and Facebook.

• Ayden Lee’s 3rd Birthday Party (Niles, OH)
  This special Elmo-themed birthday celebration is being held on Saturday, June 15. The event will take place at Waddell Park, 1000 W. Park Av. Guests are asked to bring a covered dish and drinks, as well as wear the color red in honor of Ayden’s best friend Jaxon who has EB. In lieu of birthday gifts, donations in Jaxon’s name are requested at www.debra.org/donate to benefit families supported through DebRA of America. For more information, click on this event link.
   
• MW Foundation and DebRA Tennis Pro-Am (Queens, NY)
  Details for this sporting event are still being worked out but the scheduled date is Wednesday, August 28 and plans are for West Side Tennis Club, located at 1 Tennis Place, to host the event. Proceeds from this inaugural fundraiser will benefit DebRA of America. For more information, click on this event link and scroll halfway down the page.
   
• 2013 Medtronic Twin Cities Marathon Weekend (Minneapolis, MN)
  The Jackson Gabriel Silver Foundation is currently recruiting for its team as part of a weekend-long array of events Friday through Sunday, October 4-6 including a marathon, 10-mile, 10K and 5K. Team JGSF will be running to support the work of University of Minnesota EB researcher Dr. Jakub Tolar. If you would like take part as a member of the team or get involved in some way, email alevine@jgsf.org. Proceeds will benefit DebRA. For more information about this and other events for the organization, click on this event link.
   
• Frontiers Day Fundraiser (Paris, AR)
  This event coincides with the 33rd Annual Mt. Magazine Frontier Days Festival held in October, featuring its first ever Civil War re-enactment. The EB event will be held Saturday, October 5 at the Logan County Fairgrounds, 301 W. Walnut. There will be a DebRA booth with information about EB and raffles, giveaways and a special silent auction of handcrafted items. You can get additional information about this year’s event or how to donate an item by emailing Cindi Hunter at meadowfairies@gmail.com. Proceeds will benefit DebRA. For more information, click on this event link.

Keep up with the latest on EB awareness and fundraising events.

We have a busy season ahead for EB families to support a number of special events to raise awareness and EB research dollars. Here are just some of the events we have learned are coming up. In addition to these events listed below, there are also several marathons going on throughout the year — spring included — where teams assemble to participate and run on behalf of EB-focused organizations.

Even if you can’t take part in a marathon, you can support these teams in other ways. Check out DebRA of America’s latest list of EB fundraisers and awareness across the country by clicking here and see if there’s a marathon in your home state where you might be able to support a team racing to honor EB families.

And if you know of other events, be sure to share details here on the blog or on our Facebook page, and always keep us in the loop by emailing us at leslie.rader@hollisterwoundcare.com about future events. We’d love to do our part to help spread the word.

• Rafi’s Run (New York City, NY): This second annual event is being held Sunday, March 10, 2013. The 5K run/walk event that celebrates 6-year-old Rafi Kopelan starts at 10 a.m. and is being held at Riverside Park at 103rd St. on the Upper West Side of NYC. Proceeds from the event will benefit DebRA of America. For more information, click on this event link.
   
• Tripp Roth Softball Blowout (Hammond, LA): This event, which honors the memory of Tripp Roth, offers a fun weekend of events for the whole family with food, music, raffles, bounce houses, auctions and more. Men and co-ed teams are invited to sign up. Entry fee is $300. The event takes place at North Oak Park, 2008 N. Oak St., Hammond, LA., and runs Friday through Sunday, March 22-24, 2013. For more information about this DebRA fundraiser, click here to visit the event’s Facebook page.
   
• Jogging for Jonah 5K & Fun Run (Clemmons, NC): Those looking to lace up the sneakers can take part in this second annual DebRA event being held Saturday, May 4, 2013. Details are still being finalized, but the event that celebrates 4-year-old Jonah Williams will take place at Tanglewood Park, 4061 Clemmons Rd., Clemmons, NC. For more information as it becomes available, click here for the event listing on the DebRA of America site.
   
• Butterfly Wishes for Ellie (Atlanta, GA): This year’s event will be the seventh annual benefit in honor of Ellie Tavani, who turns seven this April. The DebRA fundraiser is being held at the Park Tavern, 500 10th St. N.E., Atlanta Thursday, May 9, 2013. For more information, click here to visit the event website
   
• Love for Lucas (Avon Lake, OH): Last year, the event was first launched in memory of Lucas Patrick Harman, who passed away at just 5 weeks old. The bowling event that raised $30,000 for DebRA of America will return to Spevock’s Nautical Lanes, 184 Miller Road, Avon Lake, OH, on Saturday, May 11, 2013. Tickets are $25 for unlimited bowling, food and soft drinks. For more details about the other many activities planned that evening, including a silent auction, hourly raffles and a T-shirt sale, click here to visit the event website.

Follow along on #ebfund next week for our annual Tweet-a-Thon to raise EB awareness and funds!

We’re excited to once again launch our annual Tweet-a-Thon in honor of the nationally and internationally-recognized EB Awareness Week. This will be our third consecutive year doing the campaign, and we wanted to make certain that members of our online community were aware in advance of what to expect and how to get involved.

Each year, we like to take this important week designed to raise the general public’s awareness of EB to not only educate but also to give everyone a chance to give back in a very easy and fun way. For 24 hours straight, we will be tweeting every hour about EB in the hopes that our followers will re-tweet our updates to their own group of followers. In this way, we can all work together to reach as great a number of people as possible, and by the end of that 24 hours, we will know that there are more people familiar with epidermolysis bullosa than when the day started.

But the Tweet-a-thon has a very real reward element attached, too. For every tweet and retweet during that 24 hours using our designated hashtag #ebfund, Hollister Wound Care will donate a dollar — up to $2,500 — to DebRA of America in support of its tremendous work with individuals and families facing EB each day.

So think about it – if you re-tweeted at least 20 of our two-dozen messages to your own Twitter followers and another 49 of our Twitter followers did the very same thing, that would be $1,000 right there alone going to DebRA! Just imagine if you can persuade some of your own followers to hop on the campaign with us and forward to their group of followers.

Here is what you need to know to help:

• Yes, you need to be on Twitter to participate. It's free to join. Open your account today here.
• Follow us @EBResource and consider bookmarking our Twitter page. You may even want to put a little reminder chime on your phone for the start date and time of the campaign — or maybe even every hour on the hour to remind you to visit our page often!
• Searching for the hashtag #ebfund will also call up the posts.
• On Thursday, Oct. 25 at 8 a.m. EDT, we will tweet once every hour for 24 hours straight as we lay out the background story of EB, a Twitter campaign that we’re calling, “EB: A Day in the Life.”
• Anytime between that Thursday morning and the 7 a.m. hour when we’ll wrap up the campaign on Friday, Oct. 26, you can help us by re-tweeting (RT) our updates to your followers or sending your own tweets to them. Please make sure to use the designated hashtag #ebfund when you do.

Each year, we enjoy tackling the not-so-easy task of telling a story about EB to those unfamiliar with it, because we know that you’ll be there with us every step of the way. I hope we can count on your support again this year and that of your friends with whom you share this blog link.

And thanks so much in advance for all of your help!

Last month, I had an opportunity to attend DEBRA International’s annual meeting of DEBRA groups from countries all around the world. DEBRA Canada and Canada’s Hospital for Sick Children (“Sick Kids”) served as hosts for the DEBRA International Congress 2012, which ran from Sept. 13-16, 2012, at Toronto’s Fairmont Royal York Hotel. It was a fascinating and educational experience to be able to interact with a mix of physicians, nurses, researchers and families representing 25 countries, all coming together to share information and collaborate on common goals for the benefit of EB families.

DEBRA International made it known at the event that one of its top priorities is to encourage collaboration among the various DEBRA organizations worldwide to define and establish EB care guidelines in a number of clinical areas to be published on its website as well as within medical journals throughout the world. Their goal is for these guidelines to be made available to physicians everywhere to better understand the EB patient and best serve these patients and their families. Once created, the guidelines will be made available in as many languages as possible to serve medical communities across the world. But as with any set of guidelines, creating these take time. There are currently efforts in place to establish wound care, nutrition and pain management guidelines, and dental guidelines were just formally published by the group last month. Click here for the link to DEBRA International’s dental guidelines for EB patients.

This year’s program was broken out in such a way that each day had a different focus. Day One featured segments on EB family topics, including pain management, school issues such as bullying, skin care and nutrition. Day Two concentrated on the various care guidelines that several countries have in development with particular emphasis on the various wound care efforts from Italy, Canada’s Toronto Accord and the UK.

Day Three was all about research and offered a closer look at the EB studies in progress currently as doctors from across the world discussed their work. Dr. Jakub Tolar addressed the congress about his bone marrow transplantation procedure; Dr. Peter Marinkovich introduced his study, gene transfer for human recessive dystrophic EB; Dr. David Woodley discussed protein replacement therapy; Dr. Sarah Atkinson of the UK discussed her siRNA Therapy study; and Dr. Gabriela Petrof also of the UK shared the latest about her clinical trial studying the role of allogeneic fibroblast cell therapy in RDEB patients. During the final day of the conference, Day Four, attendees were able to be part of break-out workshops covering such specialized topics as nursing, nutrition, physical and occupational therapy and psychosocial issues associated with EB.

During the conference, DEBRA International unveiled its newly upgraded website and gave others a chance to educate attendees about their programs. For example, I learned about EB Without Borders, a group of DEBRA organizations from around the world who have joined forces to support EB patients and their families in those parts of the world where there is no DEBRA organization already established. And once again, I had a chance to meet up with the EBCare registry team, a group gathering data to establish an EB database. I learned something new that I was not aware of – that those families like mine who had lost a child previously to EB can also register with the database; it is not solely families currently facing it on a daily basis. Their representatives encouraged all families at any time impacted by EB to get in touch with them to get registered and become part of this valuable international database. The more information they are able to gather, the more thorough and complete picture they can build about EB families – who they are and how they are being impacted by this devastating disease.

All in all, it was an enlightening conference for attendees fortunate enough to take part. I’m happy to be back home from travel time away from the family, but it was educational and very encouraging to get to hear from and meet so many people committed to working together to better understand EB, to improving treatments for EB and to developing a cure.

For more information about this year’s event, check out DEBRA International’s 2012 Congress website at www.debracongress2012.com.

It’s hard to believe that EB Awareness Week is just a month away. Will you be taking part as a participant or host of an awareness event or fundraiser this year? This special week can be an ideal opportunity to collaborate with your neighborhood, child’s school or workplace and educate others about epidermolysis bullosa.

Over the next few weeks, we’ll be highlighting some events taking place later this fall, including during EB Awareness Week, scheduled for October 25-31, as well as details about this year’s Annual Tweet-a-Thon that we’ll be doing to raise funds and attention for EB. For now, we urge you to get yourself as prepared as possible for EB Awareness Week. Some suggestions:

• Get friends and family on board now. This is as good a time as any to introduce those closest to you to this week designated both nationally and internationally. Here are a couple of useful links to support your efforts to educate them about the week: DebRA’s guide to the week and the Walk a Mile in My Shoes© campaign.
   
• Set goals and expectations early. With just 30 days left to promote your event and get details completely squared away, jot down specific goals – maybe a fundraising amount, number of attendees or hits on a web page – whatever metrics will allow you to measure your event’s success. It also enables you to set expectations with others as you share these goals and energize others to take part in the effort.
   
• Establish a presence on Twitter. If you don’t already have a Twitter account, establish one and begin using the social media platform to not only promote your own upcoming event but to support EB Resource in its annual Twitter campaign. So get ready to do some serious tweeting, re-tweeting and the like. This is the third year EB Resource will spend 24 hours tweeting about EB, so stay tuned for details about this year’s campaign and how you can help.
   
• Connect with other EB Awareness Week event hosts. People often underestimate the power of networking to multiply the reach of a message. Invest some of your time and energy this month by getting to know others who like you feel that educating others about EB is worth the time and effort. Then use your own various channels to spread the word about your campaign as well as others across the country. We can’t think of a better way to support each other in the community!

If you have an upcoming EB Awareness Week online campaign, fundraiser or other awareness event, please send us details so we can share it with the community in a future blog. Just email us at leslie.rader@hollisterwoundcare.com. We look forward to hearing from you, and good luck with your planning!

It’s hard to believe it’s already been over a month since PCC 2012, but I did want to share some thoughts about this year’s event and some of the feedback that I received from families in attendance both while I was there and after I returned.

The venue, the Gaylord Palms Resort and Convention Center Orlando, was ideal for the event that continues to grow each time DebRA hosts it. In fact, I heard that we had about 80 families attending, which is our largest number ever, as some families also brought along extended family members and their caregivers, too. Between all of the attendees and the speakers providing this year’s presentations, we had at least 300 people enjoying the safety and security of the indoor hotel that was a great way for kids and their families to feel like they were outdoors with all of its greenery and vast amount of space and not have to worry about the damaging effects of the sun or heat.

Overall, the agenda was packed with well-thought-out topics, and things flowed smoothly during the conference. It was well-organized, and I was really happy to see so many new topics being discussed that had not been addressed before. In particular, I heard really positive feedback about some of the presentations on the latest research trials and headway being made clinically. I was happy to see some other interesting and relevant topics such as pain management, and a presentation by Dr. John Saroyan and Dr. Traci Stein during which they shared some more holistic approaches to pain management, including meditation and visualization.

I do wish that I could have popped into some of the presentations more often to hear the speakers that conference attendees spoke so positively about, but as always, I enjoyed getting to meet with the families, especially those whom I had not met in person before. And it was great to re-connect and in some cases meet for the first time some familiar faces who are getting involved in the EB community as advocates supporting patients and their families, such as Laurie Sterner (The Butterfly Fund), Jamie Silver (Jackson Gabriel Silver Foundation), and Christie Zink (This Little Light).

I also heard that many families got a chance to meet in person with other families that they had previously just interacted with online, via Facebook, EB Friends, or email. Occasions like the PCC are really as much about the connections being made and developed as they are about the information shared.

When parents were attending sessions during this year’s event, you could spot teens exploring the hotel or attending their own breakout session during the conference. You could also see the little ones were having a blast in the monitored Kids Room playing games, listening to tales by a professional storyteller, meeting up with a magician, and hearing from a professional wrestler who shared his own early experiences about being bullied as a kid and how he overcame these obstacles and learned to embrace what made him different. Families had a chance to meet some of the Gaylord Dreamworks characters during “meet and greets” throughout the hotel during the conference and take in dinner and a fantastic Cirque du Soleil show “La Nouba” as this year’s offsite outing sponsored by Hollister Wound Care.

So from the conference layout to the venue to the additional events and timing of all that was planned, I think overall everyone was happy that they attended the PCC, and personally, I was pleased with DebRA and their staff, and all that they did to plan such a fun, comfortable and relevant event for everybody involved. I’m not sure where they will be holding the next PCC, but I suspect–given the positive feedback many of the PCC attendees voiced while there–that other Gaylord properties would certainly be considered. In the past, DebRA has alternated locations from East Coast to West Coast each year, so I would assume that the next one planned would probably be in another region of the country, but that information has not been announced.

I heard from some families that they had wished there had been a little more time at the end of speaker sessions for more Q&A, so perhaps that would be one way that future presentation schedules could be adjusted to ensure the attendees really have the opportunity to get their main questions answered. But generally speaking, the positive feedback was overwhelming, and we saw quite a bit of it on the DebRA Facebook page, our own EB Resource page, and at my own personal Facebook page about how much fun everyone had and how much they learned, too.

On our EB Resource page, The EB Advocate happily noted, “Our team enjoyed seeing Shrek at breakfast. He is much taller than we pictured.” On my Facebook page, Elizabeth Schwartz shared her enthusiasm and appreciation for the family outing: “I wanted to thank Hollister for a wonderful and magical night during the EB PCC … Dinner at Planet Hollywood and the La Nouba show was so well coordinated not to mention all the buses that transported the families back and forth.” Faye Purpura Dilgen kindly wrote, “Big hugs of thanks to my EB moms out there who smile with their eyes and pour love and determination from their hearts. I see you with your kids and it gives me hope that I can get through this disease with you …Thanks to DebRA for bringing the world experts in EB research together to show us that hope.”

If you attended this year’s PCC and haven’t chimed in with your thoughts yet about the event, please take the time now to do so here or on our Facebook page.

Thank you again, DebRA, for a wonderful job bringing together many in the EB community for another very special event.

Sometimes to get people energized, re-charged and talking about a cause important to you, you have to think outside the box and use your imagination to spark others’ interest. We applaud the ways some key EB-focused organizations have been able to come up with fresh, inventive ways to not only raise funds for their group’s efforts but also compel people to want to learn more.

• A Fund Worth Smiling About
  We first learned about DebRA’s Smile Fund earlier this year. Inspired by the memory of 7-year-old Grace Catherine Peshkur, who was born with Recessive Dystrophic Epidermolysis Bullosa and lost her battle with the disease in 2009, this program grants wishes to children with EB. Granted gifts and activities might include special birthday parties; tickets to a special theater production, concert or sporting event; family portraits; or items such as toys, books, electronics, DVDs, video games, art supplies or webcams to keep in touch with distant friends and family. Criteria are listed on the DebRA site. All submitted requests are reviewed by a designated committee, and one request is selected each month to be granted. For more information about this program, email smile@debra.org or call 212-868-1573, ext. 101.
• Fundraising as Easy as Phoning It In
  Pioneering Unique Cures for Kids (PUCK) has been consistently finding new, innovative ways to raise research funding for the University of Minnesota’s medical foundation, certainly instrumental in the advancement of clinical studies centered on EB. So it comes as no surprise that this group was one of the first to use technology as a quick, easy means to promote the cause. Users can text “BELLA” or “TRIPP” to 50555 and a donation of $10 will be made to the university specifically for EB research purposes. The donors’ phone bills will reflect the charge or be deducted from their prepaid balance if that is the nature of their accounts. Users can do this up to six times with all donations being reserved for EB medical research. All standard messaging and data rates apply. To learn more about this, visit www.mgive.org/T.

• Cooking Up Support for EB Families
  Earlier this year, the Butterfly Fund marketing a new cookbook containing a variety of long-time family recipes, and they discovered they had a huge fundraising hit. Cookbooks cost only $15 with $3.95 added for shipping, and total proceeds from the book went toward The Butterfly Fund’s various fundraising efforts to support EB families and clinical research. What could you develop and market with value and purpose for customers that could also serve as a great fundraising tool for your favorite EB charity?
• A Refusal to Ignore EB
  Last month, we shared a two-part conversation with photographer Christie Zink of This Little Light, who shared compelling inspiration behind her I Refuse campaign. She took a concept and expanded it visually across a created kit of materials that consumers could use to spread awareness about EB to their friends and family. Proceeds from the $35 kit go directly to the PUCK and its EB research fundraising efforts. The kit includes a variety of promotional items from an attractive T-shirt and water bottle to bracelets, decals, bumper stickers and more. Zink launched the campaign in late May in honor of Bella Ringgold’s third birthday, and she says she could not have anticipated the response. She re-opened the ordering window several times between then and late June to accommodate the expressed interest in the kits and says she’s likely to market them again later in the summer. To stay current on any further developments with the campaign, visit the I Refuse EB campaign blog for the latest updates.

For many in the EB community, this week marks one of the biggest events of this year. The Patient Care Conference (PCC), which DebRA of America coordinates every other year, is a great opportunity not only for families to connect in person with one another but also to gather clinical information and EB research updates directly from those in the medical field.

As we enter the second half of the year, there aren’t many EB fundraisers or awareness events currently posted at the key EB organizations’ sites, though we anticipate events may be in the works for EB Patient Awareness Week later in the fall. As we learn about them, we’ll be sure to bring them to your attention. If you know of any events that will be taking place in your community later this summer or in the fall, please let us know by commenting here or on our Facebook page. You can also email us at leslie.rader@hollisterwoundcare.com and we’ll be happy to share your information with the rest of the community.

For now, here are some upcoming events we have heard about. Will you be attending or supporting them in some way?

• 14th Annual Mats Wilander Tennis & Golf Benefit (Scarsdale, NY)
  This fundraiser hosted by tennis legend Mats Wilander and his wife, Sonya, is being held Monday, Oct. 1, starting at 9 a.m. at Quaker Ridge Golf Club, 146 Griffen Avenue in Scarsdale. Attendees can enjoy a day of tennis and/or golf and brunch to be followed by an evening of cocktails, silent/live auctions and a 3-course dinner. Proceeds will benefit DebRA of America. Click here for additional details.
   
• Aubrey’s Butterfly 5K Run/Walk for EB (Dimondale, MI)
  Those interested in getting outdoors can sign up to participate in this annual fall race taking place Sunday, Oct. 21, at Lions Park, 300 W. Jefferson St. in Dimondale. Aubrey’s Butterfly 5K, which celebrates the late Aubrey Joy Oberlin, raised over $10,000 in 2011, its inaugural year. Proceeds benefit DebRA of America. Click here for complete details and registration.

• Team JGSF and Team DebRA at 2012 ING New York City Marathon (New York, NY)
  The world’s largest marathon, the ING New York City Marathon, takes place Sunday, Nov. 4, and offers race aficionados a chance to trek through all five boroughs of New York City while raising money on behalf of Jackson Gabriel Silver Foundation or DebRA. For information about joining the JGSF team, email jsilver@jgsf.org, and click here for additional details for joining the DebRA team.

Have you been to a past Patient Care Conference? If so, then you know firsthand how absolutely fun, informative and special these events can be. DebRA is hosting this year’s event in Orlando from July 30 to August 2 at Gaylord Palms, a beautiful, air-conditioned resort that is also completely indoors, something particularly helpful during Florida summers. The conference will be here before you know it, so before you go, we have some tips to help you fully appreciate the experience and get the most out of your visit.

• Study the agenda. We suggest planning specifically for which topics and conversations you want to be a part of during your visit, so the excitement of meeting people and the busy schedule each day doesn’t pull you away from a key objective of getting valuable information that you’re seeking. Click here for the most up-to-date agenda posted online.
   
• Start creating your list of questions now. As you’re going through your daily care routine, keep a notepad handy at all times to jot down any questions you may have as you're thinking about them. And get the whole family involved in the process, including the kids and any other family members or friends who may assist with caregiving functions. PCC is a perfect opportunity to ask knowledgeable people about the many different facets of EB.
   
• Support your friends by seeking their input. You may have other friends in the EB community who are unable to attend this year’s event. Ask them if they have any questions or topics they would like to know more about. At the conference, if a speaker offers notes from his presentation, pick up a copy so you can share with others when you return home.
   
• Read up on speakers. Educate yourself about the guest presenters who will be answering families’ questions and their own role and background in the medical field. For example, did you know that one of the leading EB researchers, Dr. Alfred Lane of Stanford, is going to be giving a presentation during this year’s event? There is so much we can learn from one another, and we are really fortunate to have such knowledgeable resources as Dr. Lane and others making themselves available to meet families and answer questions.
   
• Prepare the kids for the event. It can be helpful to sit down with the family and talk about the conference before your visit, explaining its purpose and what they can expect. They will get to spend a lot of time with other children with EB, and for some, this may be the first opportunity that has taken place, or at least for any great length of time. Encourage your children to have fun and explore in this comfortable environment as they interact with other kids experiencing a lot of the same day-to-day challenges. Remember: as you attend these informative sessions, there will be an onsite PCC Kids’ Room for children ages 6 and older, as well as for children 5 and younger who are accompanied by an adult or caregiver. The PCC Kids’ Room has plenty of room to play with toys, games, music, crafts and more.
   
• Stock your phonebook with contact info. You’ve more than likely connected with a lot of families around the country who are part of the EB community, and this may finally be your chance to meet some of them in person. But there a lot of people who will be attending this event, so be sure to get any phone numbers beforehand and enter them into your directory before you go. This way, you can connect with them once you arrive at the hotel by calling or texting.
   
• Charge up the cameras. Whether it’s your digital camera or handheld video recorder, the PCC will offer many great memories for your family to take away, from meeting and playing with other kids in a safe and creative setting to taking part in fun family outings.
   

Do you have any suggestions to offer families who might be attending for their first time? We certainly welcome your tips, too, so please feel free to share them here or on our Facebook page.

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.