Grateful for These EB Voices, Inspiring for the New Year

This is the time of year when many of us come up with our list of goals for next year – new things we will try and old things we will fix or eliminate altogether in our ongoing effort to improve ourselves. They’re called resolutions but sometimes that word can add pressure to an already difficult mountain to climb.

We thought this month, we’d combine our mission to form new resolutions with our affection for the work that so many wonderful people are doing in the EB community to make a difference. We call them EB voices and throughout the year, commend a group of people for speaking up for the community. This time, we not only thank them for drawing greater attention to what EB is all about, but we also give them kudos for providing another sort of inspiration to those of us looking to making a difference in ourselves, too.

Caroline Provost

For those who are looking to wake up every day a little bit more positive and focus more energy on being a happier person, there’s no greater example than Caroline Provost of Palatine, Illinois. This delightful and upbeat ‘butterfly child’ recently shared her own story with a local newspaper, and though only eight years old, she shares with sincerity and candor about life with EB yet maintained her bubbly and charismatic personality throughout, sharing a lesson that many of us could heed and employ ourselves. Here is the recent story she appeared in so you can meet Caroline for yourself.

Dr. Jim Sears

So often we may tell ourselves that we should take the time to learn more about subjects that would be meaningful for us to know but for which we have little knowledge. The New Year is the perfect time to set a goal to invest more in educating ourselves. We recently shared a link to a feature on the syndicated television show The Doctors in which a licensed pediatrician Dr. Jim Sears acknowledged that while he knew of epidermolysis bullosa, he had never really been exposed to what this truly looked like or meant for a patient diagnosed with it. So he recognized an area for which he needed further education and reached out to a young man, 11-year-old John Hudson Dilgen, to meet him and share with him about his day-to-day life. The television piece is poignant and their connection immediate, as you watch and recognize the doctor’s appreciation and both sadness and shock at what he’s witnessing as part of the boy’s everyday routine. Kudos to Dr. Dilgen to admitting where he needed additional knowledge and being kind enough to share his journey with the television viewing audience. Here is that story featured on The Doctors.

Lynette Argir

Like many of us, Lynette Argir had a goal in mind, but unlike many of us, her commitment outran any doubts she had of tackling them. This past jogger from Chisholm, Minnesota thought she would never run another race again, having gone so far as to compete in a half-marathon several years earlier. But when she learned that she could raise money and awareness for EB families and specifically DebRA of America by taking part in the NYC Marathon in early November, she decided that it was time to start running again. She began training for her first ever marathon in May. She could have let the limited timeframe scare her away or provide her with an excuse, but instead she chose to make her goal a priority, and we can all learn something extremely valuable from that. Click here to read about her journey to making that decision to taking part in this Hibbing Daily Tribune article.

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

  • 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 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, 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
  • 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.


DebRA of America Events Page

EB Friends Upcoming Events

Related Posts:

A Story We Must Share

Raising Awareness About EB