Why I Heart This Community

Who doesn't love Valentine's Day? Flowers, romance, candy! This weekend, sweethearts and children alike will be delighting in the holiday and just the same, in our house, I have a hunch there will be plenty of heart stickers and chocolate hearts in high demand. We never tire of fun, sweet holiday traditions like that.

 

 

 

 

 

 

 

 

 

Remember how wonderful it felt as a child to receive a Valentine from a classmate or the little friend who lived next door? What I do appreciate about this time of year is that it urges us to express what we feel about others. Too often we don't let people know how much we appreciate them, so what better time is there for us to 'share the love' too?

I 'heart' the EB community, and it like all communities is dynamic. The makeup of its membership is ever-changing as more and more families are impacted by the disease, but as we grow, I have been touched by the show of compassion and welcoming that other families have shown in trying to educate new families as well as those outside the EB community.

We all come from different backgrounds, belief systems and experiences that have made us who we are and for such a diverse group of people to come together and help one another, it is truly a beautiful thing to witness. I've been right there watching and on some occasions, initiating conversations to begin this important dialogue.

I 'heart' the dedicated people who make up the various EB organizations focused on defined missions, whether it is raising funds for advanced research or better EB treatments, growing public awareness and involvement, lobbying for change to existing insurance or regulatory policies that might challenge EB families financially, or supporting members in the community directly with wound care supplies, clinical or caregiving assistance, or other support resources. We each have our own reasons for being here and none supersedes another. But even with our own objectives as public voices and fundraising leaders, we can operate individually and still remind ourselves of our responsibility to support one another. After all, that supports the EB community and its members are the whole reason we do what we do every day.

I 'heart' the possibilities. There are new developments happening all the time in the clinical labs where smart, forward-thinking scientists are finding new avenues to explore to give EB families hope of a cure or improved treatments. We haven't begun to scratch the surface of what all of us, as separate EB organizations and members of the EB community and their families and friends, can do together but I have faith that somewhere in our missions we will find a way to make our collective message louder and clearer to the rest of the world about EB and the toll it takes on a patient and on his or her family.

I embrace this community for what it has done for me and my family, and for all that I and others can do to support other families. We still have much to learn from each other and so many more ways that we can positively touch each other's lives. And that warms my heart most of all.

Happy Valentine's Day weekend to you.

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

We Have a Dream: Greater EB Awareness

 

 

 

 

 

 

 

 

 

 

 

January is such a wonderful month for many reasons. It gives us a chance to look ahead and project the kind of success we want to achieve, whether it's tackling a New Year's resolution on our list or conquering a fear as one of our goals. Yesterday marked the birthday of a significant leader in both thought and action, Dr. Martin Luther King Jr. He had an uncanny ability to unite people for a common cause and compel other to get moving and take action.

 

The EB Community has its champions, and many of them have lent their voices to head up campaigns to grow awareness for the disease and put in place vehicles to raise research dollars and support for families. But aside from these leaders who must rely upon their own skills at motivating people to join a community and propel it forward, there are the rest of us — those who make up the community, a community still quite unknown to many throughout the world. A lot rides on our shoulders to contribute in our own unique way to this one common goal, to garner greater awareness.

 

We can take away some great wisdom from the man being honored this month for his ability to engage others through his words and passion.

 

  • Commitment is key. Dr. King once said: "Our lives begin to end the day we become silent about things that matter." It can feel like an uphill battle at times trying to get others to listen to us about something for which they likely know nothing about. But it is our responsibility, each of us, to never stop spreading the word, to not lose sight nor slow down in our quest to educate others and build our community's support network.
     
  • We must trust that while we are one spoke of the wheel, we are a valuable piece keeping it in motion. Sometimes it may feel like we are not making much progress or that we are such a small part of this movement that we can be intimidated by the job at hand. But every task that each of us does toward bringing others into our circles of knowledge and support keeps that wheel spinning. Dr. King has been quoted as saying: "Faith is taking the first step even when you don't see the whole staircase." We can't always see the evidence of where our actions may be taking us because we are so close to them but if we trust in our role and the talents we can lend to the community, we can feel secure in knowing that we've done everything in our power and ability to benefit the common goals we share.
     
  • Hurdles are inevitable but success is always possible. We are going to be faced with challenges along the way as we try to reach new audiences with our messages such as those advocating greater acceptance for all children and families facing EB or others appealing to the healthcare community and educational institutions for greater support to develop better treatments or cures. Sometimes we will overcome these challenges, and other times, we'll face defeat. But we cannot see those defeats as the end of this trek. It is only the beginning. Dr. King once said: "We must accept finite disappointment but never lose infinite hope." They are bumps in the road and we must overcome them and focus on finding our next victory.

 

Looking ahead to the new year, I hold great hope and anticipation for all that lies ahead for the EB community, and I encourage you to do the same.

 

Where We’ve Been, Where We’re Headed

Recently, I attended this year’s annual benefit fundraiser for DebRA of America hosted by the Solomon R. Guggenheim Museum in New York City. Between the elegant setting and the graceful ballet moves of Julie Kent, the event was beautiful, and it was wonderful to see so many people come out in support of a shared goal — to raise funds to provide free supportive programs and services to families impacted by EB.

This year has seen great successes for both raising funds and raising awareness for many of the organizations who work closely with EB families, the medical community and researchers. Now many of us shift our attention to finishing up our year and getting planning underway for efforts to achieve our 2016 goals.

Many of us will continue to do what we can to make whatever resources are critical to EB families more accessible, and that includes information. One of the big events to look forward to next year is the DebRA Care Conference. This conference has a new name which DebRA hosts and invites EB families from across the U.S. to attend. It is a great opportunity for families to interact and learn from one another and for everyone to be brought up to speed about the latest treatments and clinical research outcomes. If your EB family has never been able to attend, I urge you to look into attending this year’s event in Grapevine, Texas. We will be sharing more details as they become available.

Along the way in 2015, we were introduced to new faces and voices coming out in support of those directly affected by EB — some famous and others unknown until now. Each time a public figure lends their fame to attract interest to an event or campaign, or a private individual or family invites others to take a closer glimpse into their lives, we move forward: forward in helping others better understand and in starting to break down any misconceptions that might emerge about the disease.

During the first few months of the New Year, we will be sharing all that we can about ways you can get involved in awareness events and the fundraisers we are aware of and as always, we hope to get more interactive conversation going between members of the EB community. If you have ideas for upcoming blogs or other features you would like to see on EB Resource’s blog or social media pages, please contact me at leslie.rader@hollisterwoundcare.com.

From my family to yours, may you have a beautiful holiday season and a bright new year.

Thanking Those Who Spread the Word

 

Thanksgiving is a time during which many of us attempt to slow down (except during meal preparation) to remind ourselves what we have to be thankful for, so we think this is a perfect time here at EB Resource to do some thanking of our own.

 

When we set up EB Resource nearly five years ago, one of our core goals was to help members of the EB community connect with one another as well as with resources available to them in the medical, nonprofit and medical supply fields. We would not be able to set out to achieve this goal every day if it weren’t for the following invaluable people.

 

  • Nonprofits devoted to supporting EB Awareness and support for families impacted by the disease – From DebRA and EBMRF to EB Research Partnership and I Refuse EB, and several other grass roots organizations and groups of various sizes, these groups and individuals have dedicated themselves to finding their own unique niche for drawing more attention to the cause and raising funds for the particular need they hope to address. Each may have its own distinct goals and strategies but there is one tie that binds them all and that is a collective commitment to take action and inspire others to join in a movement to support the EB community.
     
  • Medical and Educational Institutions which have committed resources to EB research – Physicians and scientists are more readily joining forces on both the care and research fronts to develop and test new and improved treatments and explore potentially groundbreaking trials in the hopes of finding a cure for the disease. With care and research teams committed at such innovative institutions as University of Minnesota, University of Cincinnati Children’s Center and Stanford University, among others, many of us in the EB community remain hopeful that these brilliant minds will uncover new and promising developments.
     
  • Parents and Other EB Caregivers who share their story in the media, in their communities and online to educate others – We frequently share on EB Resource posts that spotlight EB families from across the world who have reached out to their local media to gain greater attention for their story and for the EB community as a whole. Each time a new link is cataloged on Google and other search engines, we offer another window for a glimpse at life with EB. Though we know that every story does not capture the same poignancy, accuracy or depth of the story, we are still encouraged that a growing number of media organizations are beginning to dig deep into the EB story, and we owe it to the many parents and caregivers who have shared their own family’s struggles through these articles, their own blogs or books to educate others about epidermolysis bullosa.
     
  • Supporters within and outside of the EB community who participated this year and in our past EB Tweetathons – We place much value on circles of influence and regardless of how you use your own social media accounts, so we thank those Twitter users who relay our annual messages during EB Awareness Week to their online friends and followers to help us educate and motivate others to get involved in raising EB awareness. We know it can take time, energy and diligence to retweet them all, but some of you do all that you can to make it happen and we so appreciate all who have taken part. Thank you!
     
  • Other Supporters, whether in manufacturing, the arts, business or other sectors – Messages continue to move out into the mainstream media from sources as diverse as Pearl Jam frontman, Eddie Vedder to tennis great, Mats Wilander to medical supply companies and large corporations, college groups, playwrights, photographers, actors and more who find unique ways to use their forum, audience or talents to shine a different light on EB and the people affected by it.

 

We are grateful to all of you for the many ways you’ve used your tools and voices to speak up for the EB community. And during this month of thankfulness, we hoist a mug of cinnamon-tinged apple cider or pumpkin-spiced latte around the dinner table of our EB community.

 

Thank you for all you do.

Teaming Up for EB Awareness

With EB Awareness Week right around the corner, we thought it would be a good time to share information about upcoming EB-related fundraisers and awareness events that we have learned about. If you know of others, please feel free to leave a comment on the blog, Twitter or Facebook with all of the details. And good luck to all of the event organizers! We are wishing you much success with your missions!

  • Virtual Strides for EB (Online) – EBMRF is hosting a unique month of online fundraising during which participants can register at the Virtual Strides website and connect their racing success at any location while promoting EB awareness. Thursday, Oct. 1 through Saturday, Oct. 31 Distances include 5K, 10K, and half-marathon. An FAQ about how Virtual Strides works can be a helpful read so visit this page here to learn more about the process. Cost to take part is $28. Register for the Butterfly Children virtual 5k/10k/Half Marathon and receive a custom race bib and 4" butterfly medal. A portion of the proceeds from this event will be donated to EBMRF. For more information or to register, click here.
     
  • EB Resource 24-Hour Tweetathon (Online) – It's time again for our annual tradition during which we devote 24 hours entirely to tweeting about EB on the hour, every hour. We ask those who follow the EB Resource Twitter page to RT as many if not all of our tweets designed to introduce EB to those unfamiliar with the skin disorder and spotlight helpful EB resources and voices in the community. We ask each of you to RT whenever you can during that time and be sure to include our  hashtag #RT4EB. The Tweet-a-Thon to starts noon Monday, Oct. 26 and runs through the 11 a.m. hour Tuesday, Oct. 27. Thank you in advance for your support!
     
  • Community Council Webinar on Active and Upcoming Clinical EB Trials (Online) – In honor of EB Awareness Week, those interested in learning more about EB can register for a special webinar at 7 p.m. Tuesday, Oct. 27 presented by top researchers and representatives to answer questions about current clinical EB research. Researchers from various companies and educational institutions including Dr. Jakub Tolar from University of Minnesota and representatives from Stanford University will be on-hand. For more information or to register online, click here.
     
  • Team DEBRA at the NYC Full Marathon (New York, NY) – Show your support for the DebRA of America Team participating in the 2015 TCS New York City Marathon onSunday, Nov. 1. To help raise awareness and funds for research and free programs, sign up to be a a runner or donate! 100% of donations raised will benefit programs and services for EB. For more information, click here.
     
  • Action for Jackson 2015 (New York, NY) – Come out for a tasty evening of cocktails, appetizers and auction bidding at The New York Public Library 6:30 p.m. to 9:30 p.m. Thursday, Nov. 5 and support the EB Research Partnership. The theme this year is An Evening to Celebrate Progress. Attend the fundraiser and support the research efforts of the organization. For more information or to purchase tickets, click here.
     
  • Annual DebRA of America Benefit (New York, NY) – Spend an evening at the lovely Solomon R. Guggenheim Museum and enjoy an exclusive performance by iconic former American Ballet Theatre Principal Dancer Julie Kent along with others at this annual fundraiser to be held on  Monday, Nov. 16 at 6:30 p.m. to 9:30 p.m. Evening includes cocktails, hors d'oeuvre reception, silent auction, and a DJ set by platinum-selling singer/songwriter, Kate Nash. For more information or to purchase tickets, click here.

Caregiver Stress: What You Should Know

*The 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 your healthcare needs.

 

When we take care of others, it’s easy to forget to mindfully take care of ourselves. We’ve gathered some valuable information from helpful resources in the healthcare community to remind us of who can be most vulnerable to caregiver stress, what signs to look for, and what we can do to try to safeguard our own health and well-being from stress.

 

Who is at risk? The Mayo Clinic staff points out in a piece titled “Caregiver Stress: Tips for Taking Care of Yourself” that there are factors that can make us especially susceptible to stress as caregivers. Among these factors are the following: being female; living with the person we are caring for; social isolation; financial difficulties; higher number of hours spent caregiving; and lack of choice in being a caregiver.

 

According to The U.S. Office on Women’s Health, in its Caregiver Stress Fact Sheet, 61% of caregivers are women. I certainly see it on a regular basis myself out in the EB community and at events. I meet up with parents who have chosen to be their child’s primary caregiver, and often that parent is the mother. But let’s not forget that there are fathers who are primary caregivers, too, and they are also very susceptible to stress.

 

The U.S. Office on Women’s Health goes on to note that 59% of informal caregivers have jobs in addition to the time they invest in caring for another person. Due to their caregiving commitment, more than half of these employed women caregivers have adjusted their work schedule to either leave early, arrive late or reduce their hours. Making changes like that on top of the existing stress of the caregiving process can put added stress on an individual or her family already facing existing life balance challenges as well as the financial strain from mounting healthcare bills. Adding to that a possible decrease in income may only compound the stress for that caregiver.

 

So how can we identify the early signs of stress? In that same article, the Mayo Clinic notes the following indicators that stress may be settling in for you as a caregiver:

 

  • Feeling overwhelmed or constantly worried
  • Feeling tired much of the time
  • Too much or too little sleep
  • Gain or loss in weight
  • Easily irritated or angered
  • Loss of interest in activities we once enjoyed
  • Sadness
  • Frequent headaches, body pain or other physical ailments
  • Abuse of alcohol or drugs, including prescriptions

 

Many of these probably sound familiar to a lot of us but to a caregiver they can be a particularly dangerous red flag that stress has taken over because it is hard to care for someone else if we put our own health in jeopardy. We must get our own stress under control first and learn how to manage the challenges we face before we can be the steady, calm source of care and comfort as a caregiver to a loved one relying on us for support.

 

What can we do to better manage our stress as caregivers? WebMD offers some helpful suggestions in its article “Tips for Managing Caregiver Stress” of things you can do to help reduce or control stress levels. Relaxation methods like guided imagery, mind relaxation, deep breathing and biofeedback, among other techniques can strengthen the mind and body to weather the physical storm that stress can deliver to slow down or set back any caregiver, especially one trying to balance work outside the home with caregiving at home. And nothing tests our emotional fortitude like watching our children facing pain on a daily basis pain and trying to overcome their own physical and emotional challenges.

 

The greatest advice I would give any caregiver personally would be to ask for help. Sometimes we can be wary of asking others for even the smallest shred of support but there are people out here in the community, as families, healthcare professionals and those of us in the wound care field who may have witnessed and experienced EB from a number of vantages. We are all here to provide whatever guidance, comfort, answers or support we can. Never let the stress of caring for your loved one lead you to feeling isolated. You are not alone.

 

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.