Riley's Rally for Research

We're reaching out to you, our friends and family, to ask for your support for Riley and others living with CLOVES Syndrome.   Marc and I have set a goal of raising $4000 for CLOVES research before the end of the year.  We hope that you are able to support our fundraiser we've called Riley's Rally for Research, as we aim to fund research  initiatives via  CLOVES Syndrome Community.  

Riley is happiest when she is with friends, in her classes at school and hanging out with our pets.  She loves to take pictures, perform on stage, sing her heart out, teach herself piano and conquer boxing (and kickboxing).   She is a kind and compassionate friend and an old soul.  Marc and I want nothing more than for her to be able to live fully and enjoy her life.  

Her sixteen years of life have been consistently interrupted by CLOVES Syndrome, a rare and progressive disease diagnosed in approximately 500 people worldwide.  She has gone through 28 surgeries (5 on/in her spine), MRI's in the hundreds, an average of 8 trips a year to Boston (when things are medically stable) and countless specialist appointments.   

We have been passionately advocating for Riley's care for her entire life. Through our work at CLOVES Syndrome Community, we have been able to bring together a connected and engaged patient population, that is ready for a safe and effective non-surgical treatment option for this ultra rare disease.   

A study published in June 2018 surprised and amazed us with it's incredible results, showing the reversal of CLOVES related symptoms and disease progression.   We are FINALLY feeling so very hopeful about new options for Riley and other people living with CLOVES.   We want to seize the opportunity and forward momentum that is happening now for CLOVES research and potential treatments, to bring these new options to fruition.  

We are ready to move additional research initiatives forward for CLOVES Syndrome Community.  With your help and the help of the large and loving community that has surrounded us for Riley's life, we believe that goal is just within reach. 

We are truly grateful for your care, concern and love of Riley and our family.   

Many thanks!!  Kristen, Marc, Cole and Ri