Spreading the Word for Spring and Summer

With spring already here and summer just around the corner, we thought it would be a good time to share information about upcoming events or fundraising campaigns that debra of America and other EB-focused organizations have planned during that time. If you know of others, let us know. You can email me at leslie.rader@hollister.com.

 

 

 

  • All in for a Cure (NYC, NY) – Spend an evening trying your hand (or several) of Texas Hold’em Wednesday, April 13 at the Penn Club of New York as guests compete for prizes throughout the night and benefit the EB Research Partnership. The evening includes appetizers, cocktails, a light dinner and dessert. For more information and to buy tickets, click here.

  • 2nd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, April 16 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. To find out how you can show your support and to get more event details, click here.

  • Butterflies Keep Flying Book Launch Party and Fundraiser (Richmond, VA) – Come out to join Ali Pfautz, The Story Lady, when she brings her book Butterflies Keep Flying to the Barnes & Noble at Chesterfield Towne Center (11500 Midlothian Turnpike) Saturday, April 16 for a book launch and special readings at 11 a.m., 1 p.m. and 3 p.m. A percentage of sales will be donated to debra of America. For more information, click here.
  • 5th Annual Jogging for Jonah (Winston-Salem, NC) – This event to be held Saturday, May 14 at Pinedale Christian Church offers activities for the whole family including a 5K chip-timed race for the serious runners, a one-mile Fun Run for everyone else, kids’ activities, inflatables, face painting, raffles and more. All proceeds will be donated to debra of America. For more information, click here.
  • 2nd Annual dash4dEBra (Lake Forest, IL) – Lake Forest Academy serves as host Sunday, May 22 at this fundraiser race. Proceeds from the day support debra’s many programs providing medical supplies to families and patient access to specialists, as well as raising funds to support research efforts. For more information, click here.
  • 10th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Take part in this signature fundraiser event in honor of Ellie Tavani which raised nearly $50,000 last year for debra of America. This year’s event will be held at The Park Tavern Thursday, May 25. For more information, click here.
  • 2016 debra Care Conference (Grapevine, TX) – EB families are encouraged to sign up soon for this special event held every two years, and this year, being hosted by the Gaylord Texan Resort & Convention Center just outside of Dallas Sunday, July 24 through Wednesday, July 27. For more information and to register, click here.
  • 3rd Annual Knoxville 5K (Knoxville, TN) – Those who’d like to take part in a fundraiser to support EB families and who also enjoy a good race can lace up the sneakers Saturday, Aug. 16 for this race at Victor Ashe Park in honor of an area 2-year-old living with EB. The race starts at 8:30 a.m. with proceeds to benefit debra of America. For more information and to register, click here.

Lucky to Have These EB Voices

When we first started this blog back in late 2009, we had a small community. So many people still had not heard of epidermolysis bullosa at that time. It’s been a mission for many of us to change that, and in four-plus years, it has. There are definitely more families, more communities and more researchers involved in spreading the word about EB. Here are just three of some EB voices who have been very influential in educating others about EB.

  • Andrew and Shawn Ripps Tavani. The Tavani family has been a consistent supporter of EB families through its various fundraisers for DebRA. Since daughter Ellie was born with EB in 2006, the Tavanis have been reaching out to their community and beyond to raise funds for an organization that helped them through its various support programs and continues to do so. The Tavanis coordinate fundraisers through Butterfly Wishes for Ellie including an EB Awareness Walk and their main annual silent auction fundraiser to be held this year on Thursday, May 22 in Atlanta. Click here for more details.
  • Geri Kelly, RN. Just as the Tavanis are educating communities about EB through their events, DebRA’s on-staff Nurse Educator Geri Kelly, RN, is educating anyone who may come into contact with an EB patient, to ensure they have the necessary information about the disease and to serve as a valuable resource for questions about care and needed supplies, particularly with those unfamiliar with the disease or what care may be required. As Nurse Educator, Kelly plays a vital role as a point of contact for parents of newly diagnosed children with EB, patients still trying to fully understand their condition, and healthcare professionals and caregivers managing care for EB patients. Click here to read more about her role at DebRA.
  • Alfred T. Lane MD. As a professor and Chair of Dermatology at Lucile Packard Children’s Hospital at Stanford University, Dr. Alfred Lane has been one of a small group of research leaders in the study of epidermolysis bullosa. He has become a key voice in the discussion of EB, continuing to educate others in healthcare, the scientific community and the general public about the disease and its impact. Specializing in pediatric dermatology, he continues to lead clinical trials through the University and has participated in videotaped interviews on the subject of EB that have since been made available on sites like YouTube for online learning and distribution of information. Click here to view one such interview.

Community Sound Bites

Our EB Resource Facebook community can be a great resource for sharing suggestions and offering feedback on a number of topics that impact EB families directly. We recently listened in to hear what people are talking about. This is just a small sample. We encourage you to visit our Facebook page regularly to make your own voice heard and contribute.

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

  • When we learn about vendors offering to donate a portion or all of their profits for a particular item to EB organizations, we do our best to get the word out to others so they have an opportunity to evaluate and support them if they so choose. Last month, we told our Facebook friends about Valley Vintage Scents and their handcrafted lockets for which they donate 30% of all profits to EB-related causes. One of our members Kathleen Gravers Cornell was kind enough to share her own consumer experience as a courtesy to other members: “Great lockets and very reasonably priced…While it didn’t really have much of a scent, I was very happy with the locket. Nice workmanship and detail.”
     
  • The Facebook community is also a great place to keep people informed when there is news or resources that members should know about. When we reminded everyone in May that EB Awareness Week was just five months away, the team at DebRA chimed in: “Everyone is invited to join our virtual Facebook event here: http://bit.ly/EBawarenessweekFBevent – and if you’re planning on hosting a DebRA local event to spread EB awareness, please email events@debra.org and let us know so we can send you materials.” In April, we brought up the topic of the financial toll that EB can take on families and DebRA’s executive director Brett Kopelan took the opportunity to reach out to our community’s members to explain the registry’s role in calculating these costs: “One of the reasons we, DebRA of America, created the EB Care registry was to be able to measure the true burden of care of living with EB. We wanted to know the pharmacoeconomics as well as the financial burden placed on families. It is important that all EB families sign up for the registry and enter as much data as you possibly can.” When we promoted a group of springtime EB events in a May post, our friend Shawn Ripps Tavani made sure that we didn’t miss one: “Don’t forget about Butterfly Wishes for Ellie in Atlanta, GA.”
  • Sometimes our community can be a sounding board for members to share news about other families in need or other inquiries. Earlier this spring, community member Rochi Orbegoso Pea shared news about one family’s critical circumstances: “I just posted a plea to help 6-year-old Araianita, she needs esophageal stenosis surgery and her family is fundraising to bring her from South America to Ohio. Please let me know if you can help.”
  • Our members can be very generous and not only step forward to offer supplies they don’t need or volunteer to help out in some way but they frequently offer details about their own experiences to shed light on what may or may not work in different scenarios. In April, when we asked families about reaching out to their own schools to enlighten them about EB, Sally Contreras Mata shared her own experience: “Best thing I have ever done when it came to school was set up a “meet & greet” a few days before school started with the teacher, my daughter and I. All taking place in the classroom my daughter will be for the year. This way, she could pick her desk and be comfortable the first day in school…If my daughter’s anxiety level is diminished and she feels at ease then everything else falls into place!”

We know how busy we can all get between work, other outside commitments and some much-needed downtime and recreation, so when our members take a few moments to leave a message in the Facebook forum for others to learn from or to initiate a conversation, that means a lot to us. We hope that you’ll continue to visit the EB Resource community daily and jump into the discussions, sharing your thoughts along the way. We’d love to hear from you and so would the other members. So, thanks in advance for the conversations to come!

Springtime Events

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.

 

 

EB Awareness Week Has Arrived

EB Awareness Week is here, and we’ve been sharing various ways for people to make a difference for EB families this month, including tips for planning EB fundraisers and awareness campaigns. And for the past 24 hours on Twitter, we offered followers 20 different actions people can take to support EB families or fundraising efforts. To those of you who sent tweets and RTs of our hourly updates to help us raise dollars for DebRA, a great big thank you!

We wanted to mention a few awareness campaigns and fundraisers that we’ve just learned about and which are taking place during this special annual week. If you’re able to attend or support in some way, we encourage you to learn more.

If you know of any other EB events taking place this week, please leave a comment here or on our Facebook page so the rest of the community can learn about it.

  • Action for Jackson 2011
    Support Jackson Gabriel Silver Foundation for its second annual fundraiser event on Wednesday, October 26, at 6:30 p.m. at Doubles, a private club at the Sherry-Netherland Hotel, 781 Fifth Avenue in New York City. The event will include an open bar, appetizers and an auction. Tickets cost $150 each with proceeds raised going toward EB research at Stanford University and the University of Minnesota. To request being added to the mailing list, email Jamie Silver at jsilver@jgsf.org.

· Refuse to Settle for Anything Less Than Butterflies Movement
Alexis Mae Sharp has launched a unique Facebook campaign to be held all day Friday, October 28. According to her page, here is how this pass-it-on event works: “the idea is for those of you who know about the condition to draw a butterfly on your arm, hand or bandages. When someone asks you about the butterfly throughout the day, tell them a little about the condition and then draw a butterfly on them as well. Then that person does the same when someone asks them about their butterfly and so on.” For more information, check out the event’s Facebook page by clicking here.

· Savana’s Annual Bake Sale for EB
The Wagner family of Douglassville, PA, are hosting their fifth annual bake sale to raise money for DebRA of America, taking place Saturday, October 29, from 9 a.m. to 1 p.m. at 109 Grays Run Lane. The event celebrates 7-year-old EB patient Savana Wagner and will include free face painting for the kids and opportunities for raffle prizes. For event details, visit the event’s Facebook page here.

· Butterfly Wishes for Ellie EB Awareness Walk
The Tavani family holds this annual EB event inspired by five-year-old daughter Ellie to be held Saturday, October 29, at 9 a.m., at Atlanta’s Chastain Park. Participants can register between 8 and 9 a.m. near the tennis courts with donations encouraged but not required to take part in the EB Walk to raise awareness. For the latest information about the event, visit the Butterfly Wishes for Ellie website.

· Annual EB Awareness Walk
Sign up to take part at this annual New Baden, IL, event being held at New Baden City Park on Saturday, October 29, from 3 to 6 p.m. to help spread awareness about EB and raise funds for DebRA. Lace up your sneakers, and check out the event’s Facebook page by clicking here.

Sources:

Jackson Gabriel Silver Foundation

DebRA of America

Butterfly Wishes for Ellie

Related Posts:

Gearing Up for Your EB Fundraiser

Doing Our Part: What Can You Share?

100 Links for EB Families

EB Awareness Week & November Events

With EB Awareness Week officially around the corner (Oct. 25-Oct. 31), we thought it would be a good time to share info about upcoming events occurring during that week, as well as other fundraisers taking place in subsequent weeks.

Remember: anything you do, large or small, to spread the word about EB is a great service to the rest of the EB community. Simply letting people know that this condition exists, that patients and families face challenges every day, and that it is a disease for which current research efforts need additional support and funding – this alone serves a tremendous purpose. Don’t assume that it must be a big orchestrated event to have major impact. We just learned about a birthday surprise taking place at one school today in fact (Oct. 18) being coordinated via Facebook secretly so that one young student’s classmates will head to school donning homemade EB t-shirts in support of their friend with EB celebrating a birthday. We sure hope this secret birthday tribute succeeds in surprising the young woman being honored!

So if you know of any EB awareness events and fundraisers scheduled next week or next month – of any size or nature – let us know so we can share with our readers. Just email me at leslie.rader@hollisterwoundcare.com.

  • EB Ice Cream Social (San Bruno, CA)
    Here’s a fun event worth checking out on Saturday, Oct. 23 from noon to 9:30 p.m. The owners of The Sweet Connections ice cream shop, located at 430 San Mateo Ave. in San Bruno will be hosting an all-day ice cream social with all proceeds raised during this time going to EBMRF. During the social, there will be EB videos for people to watch and learn more about the disease, an auction for EB jewelry and butterfly pins available, as well. We’re all for any excuse to visit an ice cream parlor anytime, anywhere, so if you live in the area, stop by to treat yourself and the family for a good cause!
  • California Pizza Kitchen EB Fundraiser (Beverly Hills, CA)
    We can’t think of a tastier way to make a difference than this special promotion the Beverly Hills California Pizza Kitchen is holding Tuesday and Wednesday, Oct. 26-27. During that time, if anyone brings in this special promotional flyer found on the EBMRF website to the 207 S. Beverly Dr. and presents it when ordering, a donation in the amount of 20% of the bill will be given to EBMRF!
  • Heather Keyes Rogers EB Fun Run and 5K (Asheville, NC)
    This event is being held Saturday, Oct. 30 at 9 a.m. in Carrier Park, 500 Amboy Road in Ashville and features 5K and 1 mile fun runs designed to raise awareness and funding for EB research. Registration, $20 minimum to participate in 5K; $15 minimum for Fun Run. All proceeds benefit DebRA of America with prizes awarded to participants with the most donations. For additional info, email anna_licari@unc.edu. To register online, click here.
  • 2nd EB Awareness Walk (Atlanta, GA)
    This year’s event inspired by 4-year-old Ellie Tavani and coordinated by mom Shawn Ripps Tavani’s organization Butterfly Wishes for Ellie is scheduled for Saturday, Oct. 30 at 9 a.m. in Chastain Park in Atlanta. Once again, donations are encouraged but not required to take part in the free EB Walk to raise awareness. Any donations raised benefit DebRA. Details are still being finalized and should be posted on the group’s website soon. For the latest updates on this event, follow the group on its Facebook page.
  • Shopping Extravaganza to benefit DebRA of America (Louisville, KY)
    Guests can enjoy an evening of wine, appetizers and a healthy head start on their holiday shopping on Wednesday, Nov. 3 at 6-9 p.m. at Two Chicks and Company, 12121 Shelbyville Rd. in Louisville. No cost to attend–just shop! A percentage of sales proceeds to benefit DebRA. For online sales at www.twochicksandcompany.com, just put DebRA in the comment section. And if you can’t make it Wednesday, Two Chicks has been generous enough to let proceeds go through Saturday. You just have to mention it is for DebRA of America! For additional details, contact me directly at Leslie.Rader@HollisterWoundCare.com.
  • Running to Cure EB @ ING NYC Marathon (New York, NY)
    On Sunday, Nov. 7, runner Anne Langan will be participating in this popular city marathon in honor of family members living with EB. Event opens at 5:30 a.m. with waves of races starting at 8:30 a.m. at Fort Wadsworth, Staten Island. She’s accepting support in the form of donations for DebRA directly through the organization’s site. Click here to donate.
  • 4th Annual Blind Pig Event to Benefit John Hudson Dilgen & EB Awareness (New York, NY)
    On Tuesday, Nov. 9, a fundraiser is being held at Blind Pig, 233 14th St. (between 2nd and 3rd Ave.) in New York City to benefit 8-year-old John Hudson Dilgen who has RDEB. To attend, a $20 suggested donation is encouraged, which entitles guest to drink specials and $5 raffles for prizes like theatre tickets, sporting events, gift certificates, a vacation package and more. Goals of this year’s event include offsetting the cost of medical expenses for the Dilgen family, (such as medications and wound care supplies), skilled nursing care, and home and transportation modifications (such as a wheelchair ramp and modifications to the family van to make it wheelchair accessible). For additional information about this event that’s open to the public, click here to check out its Facebook page.

Sources:

DebRA of America Events Page

EB Friends Upcoming Events

Related Posts:

A Story We Must Share

Raising Awareness About EB