Anonymous

"Desperate for a cure. Gentle hugs and love to all who hurt."

Connie R.

"In remembrance of Caroline Cauley."

William W.

"Go George Go"

Rosine B.

What can I tell you about my son George? There are not enough words to describe his qualities. Very thoughtful, kind, generous, and always willing to help others; even total strangers. I am the luckiest mom in the world to have my son George in my life. My life would be worthless without him. He is the love of my life. George, honey we will find the cure for EDS, even if we have to go to the end of the world. With God, all things are possible.    

Jeannine F.

"For Caroline"

Ashanthi D.

"To a better quality of life for all EDS patients. Thank you for making the future brighter."

Pallavi A.​

"EDS is not fun, we feel your pain.praying fir all the success and help this Institute can provide."

Francis P.

"For Eric Wang"

James A.

"For our Friend Rosine's Son, George"

Tracy S.

"I look forward to this center opening in NJ."

Gloria V.

"In memory of my niece Caroline - we love you!"

Scott O.

"In memory of Caroline"

Mateo V.

" We miss you Caroline. -- Your cousin Mateo"

Tara W.

 "In support of George Barone. It is my honor to support you and EDS."

​Official Supporters

of  

The Treatment & Research Center for

Rare Genetic Conditions​

David S.

"I am very proud of you for building support for such a debilitating disease!"

Suzanne S.

" For Caroline"

Manouk T.

"Lets find a cure"

Anna B.

"Prayer for a cure"

Marybeth C.​

"In memory of Caroline Cauley."

Shun C.

"In support of Rosine's Son George"

Linda G.

"In memory of Caroline"

Juan F.

"I believe in you Nadia and EDSers United. Let's make this goal a reality!"

Susan V.

"Keep going..."

George B.

"This Center will be a beacon of hope for all people who suffer from Ehlers-Danlos Syndrome. Please spread the word to Family, Friends, & Colleagues. We need more support!"

Jean L.

" For Hope for everyone with rare diseases and for George who inspires us all"

Michael R.

"#lovegeorge #kswiss #accessroad"

James C.

"Good luck in your effort to raise awareness."

Dana W.

"Please help find a cure for this disease!"

Rishi G.

"Good luck in the search for a cure"

Jennifer P.

" In support of George Barone."

Erika I.

"Love you George!! Erika & Chris"

Edward S.

"In Support of Rosine's Son"

Rob N.

"Hope you can help George"

Jennifer P.

"We love you George and we are praying for a cure."

Jason S.

"For research for EDS"

Ellen S.

"May we find a cure soon - we deserve better quality of life!"

Rosa O.

"Praying for your son George"

Cara N.

"This is for George."

Eric Werner and KDF Electronics and Vacuum.

"In Support of Adam's lovely daughter, Nadia."

Veronica D.

​

"Love you George! Roni"

Nicholas W.

"For Tania Barone's brother"

Daniele M.

 "For all who suffer with Rare Diseases"

Star S.

​

"Zebras unite! Hopefully on the West Coast someday, too!"

Meghana P.

"This is a great organization!"

Jeffrey Z.

"For the struggle of my amazing wife Kelly, & children Rach, Aaron, Zach, Isaac, Abbey, Noah, Emma"

Daniel Nieves

"For my best friend's Daughter, Nadia."

Fiona M.

​

"In support of the fabulous Maggie Leppert"

Liying W.

"Thank you, Nadia and EDSers United, for all that you do to help the EDS community"

Kelly Z.

"For all who suffer! Let's find a cure!"

Zachary V.

"In memory of my cousin Caroline, our inspiration.
---Zack"

Nicole M.

"All our best Dave and George."

Jennifer C.

"JennyPlusChris support this"

Nicholas R.

"For George B."

Donna D.

"In memory of Caroline Cauley, a beautiful young woman gone too soon"

Nancy T.

"Lets find a cure"

Anil B.

" Good luck in you efforts!"

Christopher K.

"Praying for this effort to help find a cure."

Brunilda Vazquez

"For Nadia my Granddaughter."

Marc L.

"For Rosine's Son George. I hope this helps"

Tom V.

" In honor of my cousin Caroline - we will work to find a cure!
-- Tommy"

Suzanne H.

"Educating providers will be key!"

Joe H.

"Good Luck."

Linda B.

​

"In memory of Caroline Cauley"

John D.

"Good Luck"

Mary M.

" For George"

Barbara M.

"For Rosine Barone's Son, Praying for a cure"

Benjamin V.

"In memory of my cousin Caroline. Love from Benjamin"

Rachael L.

"Prayers to all!"

Mary T.

"For Sweet Caroline!!!"

Ann M.

"Thank you for the work that you do."

Alexis W-W.

"Good luck!!"

Rosie, Joe Ortiz and Family

"For my nephew's daughter Nadia."

Louis & Carol G.

"Helping to support a Dear Friend of our family"

Alicia F.

"Til there's a cure!"

Pamela H.

"For George Barone"

Christine S.

"Nadia, thank you! Your heart, your vision: amazing!"

Tania B.

"Proud of my brother George Barone, on the front line, helping to build a center to find a cure"

Lauren C.

 "For George"

Our Cousin George Barone is a wonderful human being and our family loves him very much! We hope that in the near future a cure is found so that all EDSer patients can be free of pain and have hope in the future! Aloha with Love, The Crescione & Caldarone Family

Patricia C.

"For Caroline"

Jon R.

"My best to the success of the new center!-Jonathan Rodis-Co-leader EDS NE/MA Support Group"

Jessica S.

"In support of the Evans Family."

Joseph H.

"Make it known!"

Moises H.

"Best of luck raising the full amount!"

Sharon T.​

"In memory of Caroline Cauley."

Michael O.

"In support of Bryn O'Rourke"

Linda T.

"For Rosine; Fighting for her son George"

David C.

"Good Luck"

Linda S.

"Let's figure this out and find a cure. In memory of Caroline Cauley."

Rong Z.

"For George Barone"

Kristie E.

 "EDS needs this kind of support! Hope we are able to gather support to make this happen!"

Nancy M.

"Savanah you're such a brave and strong little lady. I love you."

Rodrigo S.

"Lets do this!"

Robert M.

" Hoping for a cure"

Christopher P.

"This is for our friend George."

Aelicia B.

"Happy to support a great cause. Good luck!"

Monica R.

 "Keep up the good work :)"

Christopher M.

" In memory of Caroline! Sue L"

Mary O.

​

"Please share this information and let's get it built."

Vedat Y.

"For Rosine's Son George"

Stuart S.

"Looking forward to a cure and help under one roof!"

Joseph L.

"For George Barone. Heres hoping for a cure!"

F Gordon-Cain

"In remembrance of Caroline Cauley."

Garry P.

"Caroline was taken her from family and friends at such a young age."

Brenda Y.

"Let's get this well needed center up and going"

Mindy H.

"Audrey & Abby, don't let pain stop you from living, loving and laughing. You are more than EDS."

Lisa C.

"Good Luck"

MaryPat S.

"In rememberance of Caroline Cauley."

Nella C.

"To our wonderful cousin George Barone"

Giorgio C.

"To our wonderful cousin George Barone"

Joseph G.

"This donation is dedicated to Tania Barone's Brother George...I hope you find a cure!"

Gert V.

"In memory of beautiful Caroline"

Yoony P.

"I'm signing this in support of my best friend George Barone who I love with all my heart"

Daniel H.

" I love you so much, Mandy - stay strong xoxo"

Beth M.

 "Looking forward to being part of EDSers future."

Casimiro Vazquez

"From EDSers United Supporters in Puerto Rico"

Laurene E.

"For Rosine's Son George"

Sam V.

"For my cousin Caroline. We will continue your fight. --Sam"

Meghan L.

"Prayers for a cure."

Richard W.

 "Good Luck"

Zachary M.

"For George and Dave. With love ZPM"

John C.

"Prayers for George!!"

Marshall R.

"For Tania Barones brother."

What Can You Do To Help?

Please, show your support by Pledging a $10 donation.

There are currently 7000 different types of rare diseases and disorders, none of which have a cure, several of which don’t even have a treatment option. To provide you with the sense of how many people your Pledge will help, if all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. This is very important and we really need your help and support. All of you who Pledge will be invited to our ribbon-cutting ceremony! And you will truly be making a difference.

With your support, we can raise the funds needed to make the development of WIRC a reality. Every single Pledge donation goes directly into the cost to construct and develop the physical building itself. Not one penny is going into paying our team a salary. We are all volunteers, volunteering our time, energy, personal funds and professional expertise in order to get the doors to the Wellness Institute for Rare Conditions open. 

Imagine finally being able to go to one facility where you can be diagnosed, managed and offered state of the art treatment options. And even better, you’ll be supporting ground-breaking rare disease research...research that can lead to better treatments, better qualities of life, hope for our future and the future of our children. 

Please, Pledge your support today. We and the future of the rare disease community are forever grateful for each and everyone of your pledges! ​

Robert O.

"Thank you"

Lauren L.

"Hope this helps this important cause!"

Eric W.

"Happy to offer my support. - Eric Wang"

Sean I.

"please find a cure"

Danielle H.

"I am donating in honor of my best friend George."

Kevin C.

" In Memory of Caroline Cauley"

Krista W.

"For Rosine's Son George, I hope you find a cure"

Elizabeth M.

"Good Luck George XOXO!!"

Raulito and mother Maria Velazquez

"For our cousin and his daughter Nadia."

Susan V.

​

"In Memory for Caroline. Cindy Miglin"

Tracy L.

"Zebra Strong! -The Lowanse Family"

Michael Z.

"For Caroline Cauley, from Kim Z."

Dr. M.

" For all of my patients."

Nicole P.

"Hope this helps, Love Nicole Palma and Ron Goykhman"

Peter A.

" I am donating to support my friend George Barone"

Robert W.

" I want to help my friend George Barone and all who suffer from this awful condition"

Christina B.

"For my Cousin George Barone"

Sonia B.

"For George"

Christopher B.

"Good luck, George!"

Laura D.

"From the Missouri and Illinois EDSers facebook support group, THANK YOU for your hard work."

Lauren G.

" Let's find a cure!"

Michael P.

"This is for George Barone."

Melissa V.

Praying for you to feel well!."

Ashley L.

"Good luck, god bless."

Edward C.

" I support you, George!"

Amy N.

"Make it happen!!! people need your help --signed by Amy Neeren"

Brandon S.

"Kylie & Zebras alike: May you one day find yourself cured and no longer bound by shackles of agony."

Farley Balan

"For my best friend's Daughter Nadia."

Anastasia M.

"Stay strong Zebras"

Kylie W.

"Stay strong Kylie, Brie, and Tyler!"

Mary G.

"God Bless everyone."

Judy F.

"i am a supporter"

Val Jr.

"In support of my niece Nadia."

Diane L. H.

"In honor of Caroline."

Cynthia C

"For Caroline with love"

Ruth O.

"I'm with you all the way, Nadia. Good luck and more power to you!"

Davy A.

"#CureForEDS"

Richard P.

"Good luck"

Edward S.

"In Support of Rosine's Son"

Nestor S.

"Hopeful that the cure to this rare genetic condition is on the horizon."

Nuri K.

"For our Friend Rosine's Son, George"

Christopher M.

"Good Luck George!!!"

Mary J.

"In loving memory of the beautiful Caroline C.
Praying for a cure! MKJ"

Angela P.

"For Rosine's Son George, Best of Luck with the Center!"

Lisa R.

"In support of Lisa and Mandy- hoping for a cure!"

Stacey H.

"Love this! It's SO important."

Leonard C.

"For Rosine Barone From Leonard & Maria"

Jervel V.

"Prayers for a Cure"

Susan C.

"For George."

Joseph D.

"For Rosine's Son George"

Ashton D.

"For Eric"

Michelle O.

"Glad to help in finding a cure. God bless you all. From the Ortiz family."

Lucas W.

"For the Evans family, and all the families waiting to find a cure"

Helene M.​

"We are eager to support this endeavor."

Maryellen M.

"Best of luck with everything! I'm praying for all of you, and I hope a cure is found!"

Carey F.

"In honor of Caroline Cauley"

Steven F.

"For George"

Lina T.

 "For Rosine; Fighting for her son George"

Robert B.

"Keep up the great work!"

Lorraine A.

" I'll forward this to additional folks who I know will be more than happy to support."

Jason D.

"Praying for your full recovery George!"

Michael L. W.

"My donation to EDSers United is in support of the EDSer I know."

Lori M. P.

"Such a great cause!"

Janice W.

"My hope is that a cure will be found for all who suffer from this disease!"

Manuel H.

"Keep Fighting For your son Rosine!!!"

Laura M.

"For George Barone"

Antonio Vazquez

"For my niece Nadia."

Melanie R.

 "Love you Mandy!!"

Nicole T.

"Wishing you all the best. You'll be in our thoughts and prayers!
-Nicole Tagliareni"

Anonymous

"This will extend medical knowledge to recognize and treat Connective Tissue Disorders."

William N.

"to our relative, George"

Carol F.

"May God bless those who suffer with this disease. Please help to find a cure.
-The Fantacones"

Melanie L.

"Thank you for providing an avenue to help spread the word and move us closer to finding a cure!"

Laura B.

"For Rose's Son; George"

Kim Z.

"For Caroline"

Alyssa M.

"Love you Mandy!"

Katsiaryna B.

"It is important to increase the awareness and to stay United as a community and help one another"

John S.

"Here's to a cure, George!"

Jessica P.

 "Love you George B! 
Love, Jessie P <3
#staystrong"

Hirkani P.

 "This center will be a shower of blessings for nations"

Cindy B.

"Please help my family get the treatment they deserve!"

Monica L.

"This is for you George!!!"

Diana J.

"We Will Survive"

Jacob I.

"Godspeed in the research & findings for treatment & cures."

Debbie J.

"Hope you are well, Mandy!!"

Marjorie V.

"For George"

Mandy H.

"Thank you. This will be life changing."

UPDATED - July 12, 2016

The Wellness Institute for Rare Conditions (WIRC): 

A Treatment and Research Center for Rare Genetic Conditions

Brand New State of the Art Facility Focused on Finding Effective Treatment Options and Cures for Rare Genetic Conditions

​EDSers United is spearheading the creation of a brand new facility which will house both medical professionals and scientists who will be focused on diagnosing, treating, and managing patients with rare genetic conditions, in addition to establish efficacy and safety of treatment protocols and performing scientific laboratory research that will aid in the development and establishment of effective treatment options, with the goal of discovering cures.

The center of excellence facility is to be called The Wellness Institute for Rare Conditions (WIRC) and will include a health and wellness clinic designed to provide comprehensive medical care to patients born with rare genetic conditions.  It is our goal to have a number of different medical professionals at WIRC with various specialties, including but not limited to geneticists, primary care physicians, physical therapists, cardiologists, etc. By housing a variety of medical professionals, patients will be able to address many of their complex medical needs in one place and receive more efficient and coordinated care.  Our aim in developing the wellness center is to identify and combine the best of Western and Eastern medicine and to establish the efficacy and safety of promising treatment options indicated specifically for rare genetic conditions. 

WIRC will include four laboratories staffed by researchers dedicated to making groundbreaking discoveries, with the eventual goal of developing the science that will lead to several cures. It is very important to us that our efforts unite everyone in finding effective treatments and cures.  Working together, in collaboration and unity, benefits everyone. 

Patients treated at the Center will have the opportunity to provide blood and tissue samples, and receive full genome sequencing, of which the results will be utilized by our scientists in their work. 

While the primary focus of the Center will be rare genetic conditions, we truly believe that the work we do and the scientific break throughs we develop will provide the basis for improvements in treatments for the more common diseases. 

Over the past several months, the staff here at EDSers United has been meeting with possible sponsors, including pharmaceutical companies, and healthcare providers to develop support for the Center.  The response has been very encouraging! EDSers United is dedicated to establishing this center of excellence for rare genetic conditions and has no plans of stopping any of our efforts to develop this center. All funds go directly to funding the costs to develop WIRC.

Kyle A.

"signing for dave and george!"

Joseph L.

"For George Barone"

Richard P.

 "For George. --Rich Page"

Scot M.

"Love you George"

Juliette H.

"Bravo Rosine! Lets Find a Cure!"

Gil V.

"For my grandchildren"

Allison H.

"xo - allison holzman"

Darcy T.

"This is for my girlfriend and everyone who shares in this battle."

Anthony T.

"For Rosine's Son"

Merle K.

"I am signing this petition to show support for this treatment and research center"

Sebastian V.

"For the Cauley family. Love from Sebastian"

Richard R.

"Stay Strong"

Megan W.

"For Uncle George xoxo Coraline"

Fiona S.

"Hope this helps"

Flor Maria Velazquez, Daughter Ada Rodriegez and Family

"In support of our nephew/cousin's daughter Nadia."

Susan M.

"Wishing you good luck!"