Posts belonging to Category 'Events and Fundraisers'

Made Your Summer Plans Yet?

 

 

 

 

 

 

 

 

 

 

 

 

We know it is only January but for EB families, we certainly hope this summer is already reserved for an important event for the EB community. For those who aren’t aware, this summer marks debra of America’s national conference, the debra Care Conference (DCC), held every two years and geared towards EB patients and their families. The conference, formerly known as the Patient Care Conference, is a wonderful opportunity for EB families to not only interact with each other but gather valuable information directly from EB community advocates, medical professionals and researchers, all while having a fun, relaxing summer vacation at a beautiful destination resort.

 

I’ve attended previous DCC events, meeting up with families and catching as many presentations as possible, and once again, I am looking forward to this year’s event. The 2018 DCC will be held July 22-25 at the Sheraton Grand at Wild Horse Pass in Chandler, Arizona, just outside of Phoenix. Speakers will be taking part and sharing information about the latest research being conducted to develop better treatments and find a cure for epidermolysis bullosa. There will also be wound care supply companies in attendance like Hollister Wound Care who I represent, and many of us will be on hand to answer questions and demonstrate products for families.

 

But aside from the obvious reasons for EB families to attend –the educational opportunities, valuable information and product samples as well as the beautiful hotel setting – the greatest benefit of all (in my humble opinion) is the chance to connect with other families that share similar experiences and challenges. When parents receive word of an EB diagnosis, they often feel alone in their struggles and questions, and the debra Care Conference reminds all of us that we are not alone, and that bond becomes stronger when people get to meet face-to-face and spend time together both learning about what they’re facing and simply enjoying some recreational activities with others with whom they can truly relate, no matter what part of the country they call home.

 

As with past conferences, debra of America will set up playrooms onsite along with fun activities that the children in attendance can enjoy supervised while parents go to presentations, talk to medical providers and vendors, and socialize with other adults.

 

July may seem far away, but this conference is a popular one, so I encourage you to sign up soon if your family plans on taking part. The DCC usually attracts around 600 guests from the EB community. If you’ll be joining us, make your reservation soon. Registration for the 2018 DCC is scheduled to start this month through debra. Keep up with their latest updates at their Facebook page or on their website at debra.org.

And to learn more about this year’s venue, visit the hotel’s website at wildhorsepassresort.com.

 

I hope to see you there!

 

EB Happenings This Fall

Autumn is almost here, and this season, a variety of events are planned to raise EB awareness and research or resource dollars to support patients and families impacted by the disease. Here are some scheduled events or ongoing campaigns, as well as links where you can get additional information should you wish to get involved or lend your support. If you know of other events planned during the remainder of 2017, please let us know. You can email me at leslie.rader@hollister.com.

  • 7th Annual Night of Discovery (Long Beach, CA) – Indulge in a special evening ‘under the sea’ to benefit EB Research Partnership hosted by Aquarium of the Pacific 7 p.m. to 10 p.m. Saturday, September 23. This year’s theme is “Lighting a Path Towards a Cure,” and will include cocktails, dinner and an auction. For more information and to buy tickets, click here.
     
  • TEAM DEBRA at Bank of America Chicago Marathon (Chicago, IL) – Lace up the sneakers or support the existing crew of participants hitting the pavement in Chicago’s Grant Park on Sunday, October 8. Runners from all 50 states and over 100 countries will be taking part. Runners start at 7:30 a.m., 8 a.m. and 8:35 a.m. TEAM DEBRA proceeds will benefit debra of America. For more information, click here.
     
  • 19th Annual debra of America Benefit (New York City, NY) – Come out for this yearly debra fundraiser being hosted by Guastavino’s on Thursday, October 26. Event runs 6 p.m. to 10 p.m. and will include cocktails, hors d’ oeuvres, a silent auction and a seated dinner. For more information and to buy tickets, click here.
     
  • Debra Inaugural EB at TPC (Duluth, GA) – Tee up for a good cause at the debut of this benefit golf tournament at Sugarloaf Golf Club Monday, November 13. Registration, breakfast and driving range begin at 8 a.m. with shotgun start at 11 a.m. Take part on the links or attend the post-tournament reception. For more information, click here.
     
  • Prevail Activewear EB Fundraiser (Online) – Browse a new line of active wear launched by actor and fitness buff Josh Brolin and wife Kathryn and support EB families in the process as part of this Limited Time Offer. Fifty percent of the proceeds of Prevail Activewear will go directly to St. Jude’s Children’s Research Hospital and the Epidermolysis Bullosa Medical Research Foundation. For a closer look at this new clothing line, click here.
     

Springtime EB Awareness Events

From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.

 

Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).

 

In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.

 

  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.

 

  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
     
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
     
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.
     

Springtime EB Awareness Events

From time to time, we like to take the opportunity to share how EB-focused organizations and individuals are using events or launching their own as a means of creating EB awareness. Sometimes it takes finding unique ways to tie our interests or talents to a good cause.

 

Many in the EB community who run or walk for recreation have found a way to channel their participation in race events to create or join teams and raise funds for EB-focused nonprofits such as debra of America and EB Research Partnership. Some upcoming events with representatives hitting the pavement to raise EB awareness include the 2017 Skechers Performance Los Angeles Marathon (March 19), 2017 United Airlines NYC Half Marathon (March 19), the 2017 Cincinnati Flying Pig Marathon (May 6) and the 2017 TD Five Boro Bike Tour in NYC (May 7).

 

In addition to such participation in national races, the EB community is getting the word out about EB via other upcoming events across the country we wanted to share here and encourage you to pass the news along or show your own support if you feel so inclined. If you know of any other events or are planning your own upcoming fundraiser or awareness campaign, comment below and share that information.

 

  • 3rd Annual Dig Up a Cure for EB (Lexington, NC) – Teams will compete in a charity volleyball tournament Saturday, March 25 at North Davidson High School, located at 7227 Old U.S. Hwy. 52. Proceeds from the event will benefit debra of America. Families are invited to come out for an afternoon of fun and community. For more information on how you can show your support, click here.

 

  • 6th Annual Jogging for Jonah (Winston-Salem, NC) – This event is being held in honor of Jonah Williams Saturday, April 1 at Pinedale Christian Church and offers activities for the whole family. This year, the 5K and Fun Run have been combined into one fun-filled running and walking event, Laps for a Cure! This new race will allow participants to select the number of laps they would like to run/walk and raise money per lap completed. Proceeds benefit debra of  America. For more information on how you can show your support, click here.
     
  • Ride for EB 2017 (NYC) – Those who enjoy cycling can strap on their spin shoes Sunday, April 30 for a charity ride at Cyc’s new Upper East Side location at 1231 3rd Av. Registration is $50 and includes a 45-minutes of invigorating spinning with “Cycologist” expert Ellie Eagle, complimentary spin shoes and water and five raffle tickets for an opportunity to win prizes. All proceeds benefit EB Research Partnership. For more information on how you can show your support, click here.
     
  • 11th Annual Butterfly Wishes for Ellie Benefit and Silent Auction (Atlanta, GA) – Attend this annual fundraiser event in honor of Ellie Tavani to benefit debra of America. This year's event will be held at The Park Tavern in mid-town Thursday, May 4. For more information, click here.
     

Preparing Your Butterfly Child for School

*Information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to any healthcare needs.

 

It’s that time of year again when families transition into different schedules and routines: the start of a new school year. For some in the south, its already begun. For our friends in the north, it looms.

 

For EB families, the school year presents its own set of challenges as parents have to worry not only about children’s usual needs like outfits and school supplies but also about ensuring their child’s physical safety offsite in an environment not likely to be EB-friendly. In the past, we have blogged about things you can do to support your child and work toward a healthy and fun school experience.

 

  • Plan Ahead:  a few years ago in a blog titled “Connecting with Your Child’s School about EB,” we offered different things you could do as a parent to set up your child for comfort and success in his or her new weekday surroundings. These may include everything from packing a bag of extra comfortable clothing to be stored in the classroom to scheduling a private meeting with the school nurse and teacher to discuss your child’s health challenges beforehand.
     
  • Start a Conversation:  in another past blog titled “Bringing Your Child’s School on Board,” we noted various ways you can initiate a discussion about EB in your child’s school and what people you may want to get involved in the talk. The first step in educating others is introducing them to the language and basics about epidermolysis bullosa. With the use of some other key sources of information and educational resources, you can begin to build a support network of educational professionals also looking out for your child when he or she is away from home.
     
  • Lean on Others:  we may say this often, but it is true — we are all here for each other. Our online community of EB patients and their families continues to grow and other families can be a great source of ideas and support for challenging life transitions such as sending our butterfly children to school. In another previous blog titled “Families Helping Families,” we note that social media tools can be invaluable for reaching out to other parents with questions or polling them about challenges that come up during the school year. As long as we are sharing our experiences with one another, we can all become better equipped to handle whatever comes our way, and as EB parents who have already guided our children through the transition to school, we always have that gift of experience to offer others.

Looking Ahead to the debra Care Conference

What is it like to be a parent of a child diagnosed with EB? How are lives changed when family and friends become caregivers? What does the future hold for EB families in terms of treatments and any possibility of a cure for EB? It may be a small group of us who know these questions all too well or ponder them ourselves as we strive to look forward, but for those who live with EB every day, we quickly learn that the more information we can gather, the better our family and tight circle of friends and co-workers can tackle it.

 

Every other year, debra of America hosts a comprehensive forum of parents, caregivers, physicians, nurses, researchers, medical suppliers and other individuals and organizations focused on the impact of epidermolysis bullosa. This year, debra has scheduled its latest debra Care Conference (formerly known as the Patient Care Conference) for Sunday, July 24 through Wednesday, July 27, 2016 in Grapevine, Tex. at the Gaylord Texan Resort and Convention Center. If you are part of an EB family or invested in doing more for the cause, this can be a valuable experience and one I highly recommend looking into attending.

 

 

Information is regularly being updated on the debra website, so be sure to check back frequently for agenda and speaker details as they become available but here's what you should know now in order to register.

 

  • The hotel is located just outside of Dallas and if you've ever visited a Gaylord Resort before, then you know it is a completely awe-inspiring setting, a totally enclosed space beautifully decorated and populated by lush greenery and expansive, fun areas for families to explore without worry of the dangers of sun exposure or outside elements. Gaylord Resorts continue to be the ideal locale for this event, perfect for EB families looking out for those with fragile skin. You can learn more about this particular resort by clicking here.
     
  • As in the past, the organizers are doing their best to make available to attendees, primarily EB families, access to leading clinical researchers to share the latest about their progress in the field and representing some of the top facilities in the world with focused EB trials and treatment development underway. Attendees will get to ask questions and learn more from these experts as well as from each other as some relevant conversations are led by a variety of knowledgeable guest speakers.
     
  • If the information EB families take away with them and the spectacular resort experience weren't enough, probably the greatest part of all about the conference is the opportunity to connect with other families going through similar experiences. I've had so many people tell me that they've met some of their best friends and supporters in the EB community while attending a past conference. Our families may be spread out across the country, but at this special event, we all come together under one very big roof and get to talk, learn, play and share in a meaningful and sometimes life-changing way.Members of the EB community have shared with me afterward how this experience helped them truly realize they are not alone in their struggles. That could be the most valuable benefit of attending right there!
     
  • Registration is officially open now, so for those who have EB or with a member of the immediate household diagnosed with it, click here to register. All other individuals interested in attending may click here for more information.
     
  • If you're still not certain you want to attend, maybe stop by the site's FAQs and resolve any concerns or confusion. Also, I find it helpful to get a glimpse of past events sometimes when I'm making a decision on attending a conference. You can see links from the past three conferences at the debra site, as well. Click here for a look at the 2014 Conference.
     
  • This year, the conference organizers are launching something new, the DCC Express Yourself Challenge, open to both those planning to attend the conference and others who won't be able to be there in person. Debra wants to know people's feelings about being part of the EB community and their thoughts on past events, as well as expectations for this year's conference from those who will be attending. Click here to read up on how you can take part in the DCC Express Yourself Challenge!

 

The debra Care Conference is a unique experience that unites a diverse community in a way that encourages collaboration, interaction and education. I hope that you'll be able to join us. And if you are considering, please act soon. Each year, this event fills up quickly, and I wouldn't want you to miss out on this great opportunity. For more information about the site, go to the conference's main web page for details and contacts, should you have any other questions.

 

I hope to see you at the 2016 DCC! If you see me there, please stop by and say hello.

 

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.

EB Events This Fall

With fall right around the corner, we thought it was a great time to make everyone aware of some upcoming fundraisers and awareness events that can benefit the EB community as well as educate others. If you know of any upcoming EB events, please let us know by emailing me at leslie.rader@hollisterwoundcare.com.

 

  • Mats Wilander Foundation & DebRA of America Tennis Pro-Am (Forest Hills, NY)
    Check out this 3rd annual event to be held at the West Side Tennis Club Wednesday, Sept. 2. Wilander will be joined by past pros and celebrity guests on three different court surfaces. Participants will enjoy food, refreshments, instructional clinics, competitions and more, with proceeds to benefit DebRA of America. For more information about this event, click here.
     
  • 2nd Annual Butterfly 5K (Lore City, OH)
    Walkers and runners can sign up for this event in honor of Hannah Blake Saturday, Sept. 12 at Salt Fork State Park, located at 14755 Cadiz Rd. The race course is paved so those with strollers and wheelchairs can enjoy this family-friendly event. The park also offers overnight accommodations for anyone looking to extend their visit with cottages, lodge rooms and campgrounds available.The day will include music, food and raffles. For more information about this event, click here, call 740-491-0396 or email abbyroberts93@yahoo.com.
     
  • Epidermolysis Bullosa Quarter Auction (Chesapeake City, MD)
    Supporters at this Saturday, September 26 EB fundraiser will be able to bid on donated items and enjoy food and beverages at VFW Chesapeake City located at 304 Basil Av. Tickets are $7 for two bid paddles in advance and $9 at the door. For more information about this event, click here or to register, call Carolyn at 443-655-7816.
     
  • Medtronic Twin Cities Marathon Weekend (Minneapolis-St. Paul, MN)
    EB Research Partnership is taking part in this annual marathon Friday through Sunday, October 2-4 for the organization's support of the research work of Dr. Jakub Tolar at the University of Minnesota. In the last four years, EBRP has raised almost $500,000 for its EB research fundraising efforts. For more information about this event, click here and for sign-up details, contact Abbie Levine at abbie@ebresearch.org.
     
  • Team DEBRA at the NYC Full Marathon and Half-Marathon (New York, NY)
    TEAM DEBRA is seeking the support of donors and fans to cheer them on at this year's marathon event Sunday, November 1. Since 2012, a team representing DebRA of America has raised over $100,000 for the organization's programs and services. For more information about this event, click here.
     
  • 17th Annual DebRA of America Benefit (New York, NY)
    Art lovers and EB community supporters alike can come out for a special fundraiser Monday, November 16 at the Solomon R. Guggenheim Museum. This year's benefit will honor John F. Crowley for his extensive work in the rare disease field. For more information about this event, click here.

EB Events This Fall

With fall right around the corner, we thought it was a great time to make everyone aware of some upcoming fundraisers and awareness events that can benefit the EB community as well as educate others. If you know of any upcoming EB events, please let us know by emailing me at leslie.rader@hollisterwoundcare.com.

  • Mats Wilander Foundation & DebRA of America Tennis Pro-Am (Forest Hills, NY)
    Check out this 3rd annual event to be held at the West Side Tennis Club Wednesday, Sept. 2. Wilander will be joined by past pros and celebrity guests on three different court surfaces. Participants will enjoy food, refreshments, instructional clinics, competitions and more, with proceeds to benefit DebRA of America. For more information about this event, click here.
  • 2nd Annual Butterfly 5K (Lore City, OH)
    Walkers and runners can sign up for this event in honor of Hannah Blake Saturday, Sept. 12 at Salt Fork State Park, located at 14755 Cadiz Rd. The race course is paved so those with strollers and wheelchairs can enjoy this family-friendly event. The park also offers overnight accommodations for anyone looking to extend their visit with cottages, lodge rooms and campgrounds available.The day will include music, food and raffles. For more information about this event, click here, call 740-491-0396 or email abbyroberts93@yahoo.com.
  • Epidermolysis Bullosa Quarter Auction (Chesapeake City, MD)
    Supporters at this Saturday, September 26 EB fundraiser will be able to bid on donated items and enjoy food and beverages at VFW Chesapeake City located at 304 Basil Av. Tickets are $7 for two bid paddles in advance and $9 at the door. For more information about this event, click here or to register, call Carolyn at 443-655-7816.
  • Medtronic Twin Cities Marathon Weekend (Minneapolis-St. Paul, MN)
    EB Research Partnership is taking part in this annual marathon Friday through Sunday, October 2-4 for the organization’s support of the research work of Dr. Jakub Tolar at the University of Minnesota. In the last four years, EBRP has raised almost $500,000 for its EB research fundraising efforts. For more information about this event, click here and for sign-up details, contact Abbie Levine at abbie@ebresearch.org.
  • Team DEBRA at the NYC Full Marathon and Half-Marathon (New York, NY)
    TEAM DEBRA is seeking the support of donors and fans to cheer them on at this year’s marathon event Sunday, November 1. Since 2012, a team representing DebRA of America has raised over $100,000 for the organization’s programs and services. For more information about this event, click here.
  • 17th Annual DebRA of America Benefit (New York, NY)
    Art lovers and EB community supporters alike can come out for a special fundraiser Monday, November 16 at the Solomon R. Guggenheim Museum. This year’s benefit will honor John F. Crowley for his extensive work in the rare disease field. For more information about this event, click here.

Growing Support for EB Awareness

Whenever we have the opportunity, we like to share information about upcoming EB awareness events and fundraisers so that our fellow members of the EB community show their support or help spread the word through their own social media channels. Here is a diverse list of events we have learned will be taking place over the next few months, and it involves everything from running to biking to gambling.

  • 2015 New York City Half Marathon (New York, NY)
    Supporters can come out to cheer or donate to TEAM DEBRA taking part in this race event on Sunday, March 15. Runners will take a 13.1 mile tour of The Big Apple, and 100% of TEAM DEBRA's donations raised will go toward DebRA of America's programs and services. For more information about this event, click here.
     
  • Cycle for a Cure (New York, NY)
    If bicycling is more your interest, a fundraiser is scheduled later this month that will allow participants to take a fun bike ride together, again around New York City. The event starts at 2:30 p.m. Saturday, March 21, at SoulCycle's West 27th St. Studio. Participation is open to cyclists age 18 and over with tickets $50 general admission and $75 VIP. For more information about this event, click here.
     
  • Dig Up a Cure for EB (Lexington, NC)
    Families can take part in a volleyball tournament with six or more players required per team, with two separate brackets based on skill level, at this event scheduled Saturday, March 21, at North Davidson High School located at 7227 Old U.S. Hwy. 52. For more information about this event, click here and scroll down to one of the North Carolina event entries.
     
  • What Were We Talking About? An original play (Louisville, KY)
    Those in or near the Louisville, KY-area can come out for a performance of an original play written by the Wyoming Magnolias and being performed at 6 p.m. Saturday, March 21, at Gardenscourt Louisville Seminary, with proceeds to benefit the EB community. For more information about this event, click here.
     
  • Cyndi's Wish for a Cure (Miss Point, MS)
    Supporters can shop at this garage sale with proceeds benefiting DebRA of America. Event takes place 6 a.m. to noon Saturday, April 11, at 17729 Hwy. 613. For more information about this event, click here.
     
  • All In for a Cure (New York, NY)
    Poker fans can have some fun and benefit the EB Research Partnership at this debut Texas Hold 'em EB fundraiser 6 p.m. to 10:30 p.m. Thursday, April 23, at the Penn Club. For more information about this event, click here.
     
  • Flying Pig Races (Cincinnati, OH)
    This series of 10 race events takes place over Saturday and Sunday, May 2-3, featuring a marathon, half-marathon, 10K, 5K, 4-person relay, Beer Series, High School Challenge and Kids's events. For a third consecutive year, DebRA of America has been selected as the official charity partner for this 17th annual benefit and will have a tent set up at the event. For more information about this event, click here.
     
  • 9th Annual Butterfly Wishes for Ellie (Atlanta, GA)
    This benefit event and silent auction in honor of Ellie Tavani will be held on Thursday, May 7, at The Park Tavern in Midtown Atlanta. Last year's event raised nearly $50,000 for DebRA. For more information about this event, click here and scroll down to the Georgia section.
     
  • 4th Annual Jogging for Jonah (Clemmons, NC)
    This race event in honor of Jonah Williams is scheduled to start at 8 a.m. Saturday, May 9 at Tanglewood Park. The day will include a 5K race and fun run, as well as a raffle, face painting, inflatables, food and beverages, music and more. Proceeds benefit DebRA of America. For more information about this event, click here and scroll down to one of the North Carolina event entries.

If you know of some future EB awareness events or fundraisers scheduled, please reach out to us at leslie.rader@hollisterwoundcare.com so we can help promote these upcoming benefits in future social media posts or blogs. And many thanks in advance to all of those who have invested their time, energy and resources in coordinating and supporting these events to directly benefit the EB community. We are sending best wishes to all of you for very successful events!