Sunday, 16 September 2012

Whats happening in our EB community??

Well its been a while since my last posting but felt there were a few stories i needed to share with you all.

Would love to share these amazing little boys... Harry & Cody

Their parents Steph & Chris fight every step of the way for what the boys need so it was lovely to hear they got some help without a fight.... The community came together when needed most. Builders, decorators and friends came in to completely make the new house ready to move into. Then friends set about to have the garden made over, giving the boys a safe place to play.....Look at the pics!

A lovely gift!!

Harry with daddy Holding the Olympic torch


Well back in May we said good bye to a sweet girl Rebecca Brewer as she lost her battle with EB. Family & friends alike were shocked by the news and an upset worldwide community came together.

RIP sweet Rebecca x


We also said goodbye to the sweetest little angel Chloe Lee Jones. She was born December 4th 2011 6 weeks early. She has one of the most fatal forms of EB. She weighted 3 pounds 15 ounces when she was born and weight almost 4 pounds 13 ounces when she passed away on March 24th 2012.

RIP Chloe Lee Jones

Some good news was the Debra America's PCC - Patient Care Conference 2012 held in Florida. Everyone had an amazing time, meeting other families coping with Eb and alot they had spoken to for the last 12 months on our very own Lounges - Eb Lounge, OPEN Group
Follow the link to see the amazing photgraphy taken by a wonderful lady Christie Zink:

Look forward to the next one in 2014........


Some beautiful news was that Courtney & Stephen got engaged!!! 

Wishing them all the best in their journey together...


An absolute must read for ALL

Kidowed by Jessica Kenley

In this book you'll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease.

In this book you'll find the the struggles, sorrows, and triumphs of the author after she has two children with a rare and universally fatal genetic disease. As she travels through her hellish journey, you will experience unexpected humor, endless love, and learn how strong one family can be while they walk beside her.

Kidowed is ranked #52 right now out of over 1 million ebooks on! 


One of our EB advocates Christie Zink, in the states has been nominated for "Women who shine - Activist"
The prize is $10,000 and I would LOVE nothing more than to give it back to EB community in some way. I just need all the help I can to get can only vote once and then done. As a winner, I would also be able to have a feature article done which I would again want to focus on the EB community. 

Christie Zink 
Category Activist

She's a dedicated advocate for EB Awareness and fundraising. Epidermolysis Bullosa, EB, is a rare and devastating connective tissue disorder that affects 1 in 50,000 live births. The slightest amount of friction can cause severe and excruciatingly painful blisters. She uses her photography business to offer pro-bono sessions for EB families. She has created countless videos for EB awareness, reaching several thousands! She started numerous Facebook groups and pages that help spread awareness. She singlehandedly created the successful 'I Refuse' campaign that has spread EB awareness across the country. She runs the site,, where she blogs and shares EB stories. She raised over $16,000 for to benefit Dr. Tolar and his research to cure EB. She's the first to offer help to new EB families. She attends countless EB events. She was the media advocate for Tripp Roth, ("EB"ing a Mommy). She took multiple trips to stay with the family, and organized many fundraisers. She was part of the "Save Jax" team creating national awareness to get Congress involved and Medicaid approved for his BMT. She attended the 2012 DebRA PCC as the DebRA photographer. The list goes on. She is an extraordinary woman who is generous and compassionate. She inspires many people, and donates so much of her time, all while maintaining a business, running a household, and being a loving wife, mother and friend. She is a blessing


An amazing guy!!
Posted by Zara Hogg:
My nutter of a brother in law (Darren Cooper) will run the first of 4 races: The Chester Marathon. This will be followed on 14 October with the Oxford Half Marathon, 20 October Weymouth 10, and finally 28 October The Great South Run. Darren is doing all of this for DebRA, the charity that supports sufferers of EB, a condition that my son Harry has. Please spare a few pennies and sponsor him.
On 7th October I will run the Chester Marathon

On 14th October I will run the Oxford Half Marathon

On 20th October I will run the Weymouth 10, and;

On 28th October I will run the Great South Run.

 October 25th-31st is EB awareness week
Around the world alot of fundraisers are being held but i am requesting one thing during this week. Please locate a family near YOU...Pop round and help out...Take some laundry, walk the dog, take other sibblings out to the park, make a meal, mow their lawn....You will not understand how these little things cause major stress.
Not too hard and will not cost you a penny! 
Just doing something will ease the burden for someone that would probably never ASK for help. 
Amazing news for all EB patients
  Irish biopharmaceutical giant Shire plc (NasdaqGS:SHPG) has agreed to acquire Lotus Tissue Repair, a biotech focused on the treatment of a rare genetic disease.
Cambridge-based Lotus Tissue Repair is developing a protein replacement therapy for the treatment of dystrophic epidermolysis bullosa (DEB). Shire’s acquisition of Lotus Tissue Repair, announced Tuesday, will enable the company to expand its focus on EB, a group of genetic conditions which cause the skin to be very fragile and to blister easily, according to Lotus investor Third Rock Ventures.
“This allows them to build out their franchise and have great capabilities for patients with this rare genetic disease,” Third Rock partner Neil Exter told Mass High Tech. “It is empowering for everyone at Third Rock.”
An estimated 50 of every one million live births are diagnosed with EB. Of those cases, approximately 5 percent, or 300,000, are DEB. Because the availability of patient information is what Lotus describes as a “major hurdle faced when researching rare genetic diseases,” the company is collaborating with DEB Research Association (DEBRA) International and DEBRA of America to develop the first international patient-reported registry for epidermolysis bullosa (EB).
The investment firm, which focuses on rare genetic disorders, started Lotus two years ago and invested $26 million in Lotus in June 2011. “What we found intriguing was the technology that came out of the labs Mei Chen of USC (USC Keck School of Medicine),” Exter said of the Lotus Tissue co-founder.
“This disease is a devastating disease,” he said. “Financially, there are good opportunities there, but you also have a great opportunity to interact (with patients) and see the hardships and this drives you further.” The company’s sole employee, Mark de Souza will move from his Cambridge office to Shire’s location in Lexington.
Lotus’ sale to Shire marks the second exit for Third Rock since it was founded in 2007. Third rock sold Cambridge-based Alnara Pharmaceuticals to Eli Lilly for $380 million in 2010. Alnara and Eli Lilly now have a potential cystic fibrosis drug under development. The potential treatment was rejected by the FDA last April.

Update more shortly x

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