Basement Benefit - Uniting CSS Families - Has Ended

“The Basement Benefit – Uniting CSS Families” 6th April 2019 at The John Meagher & Co Building – in the historic Basement venue.
 

In order to raise the necessary funds to put on a conference I am holding a cocktail charity event. 

The night will include an amazing historic & unique venue, brilliant food (supplied by the fabulous Michelle Seymour Catering), as well as great entertainment and a fun auction with a number of pledged prizes and experiences. BYO Alcohol.
 
These funds will help support CSS families with travel expenses and associated costs, as well as going towards funding the attendance of the head of Genetics research for CSS.

A Rare Situation 

In 2016 our daughter Stella, was diagnosed with a rare genetic syndrome called Coffin-Siris Syndrome (CSS).  Coffin Siris Syndrome is a condition that affects several body systems. Although there are many variable signs and symptoms, hall marks of this condition include developmental disability, abnormalities of the fifth fingers or toes, and characteristic facial features. Most affected individuals have mild to severe intellectual disability or delayed development of speech and motor skills such as sitting and walking, frequent respiratory infections, poor muscle tone, seizures, heart complications, difficulty feeding  and ADHD just to name a few.
 

As a result of Stella’s diagnosis, I have since learned that there are approximately only 200 cases globally and 17 confirmed diagnoses in Australia.  Due to the myriad of symptoms associated with the diagnosis, each and every CSS family endures their own journey, however we all have the common experiences of endless medical appointments, multiple medical procedures, added stress emotionally and financially and uncertainty as to what the future may hold for our child.

 
A Light at the End of the Tunnel 

In September 2018 our family travelled to the United States of America to attend a conference for CSS. We found this to be an extremely valuable experience. Not only as a fantastic source of information from medical professionals but also a way to create a support network for ourselves. You see, because of the extremely rare nature of Stella’s syndrome, we had never met another child or family with CSS, until we attended this event. It was an emotional and overwhelming moment when Stella met a little girl from Israel also with CSS; they locked eyes with each other and hugged for what felt like an eternity. We now don’t feel alone in this journey and Stella has friends from all over the world.
 
This isolation is the same for many Australian and New Zealand families, unable to connect face to face with other families and leading health professionals in the field of genetics.  Due to the syndrome’s lack of prevalence, its existence is not common knowledge amongst health care professionals and CSS parents often have to lean on one another for both support and information.
 
Can we Re-Create that Special Moment? 

In order to expand our relationships, exchange experiences and strengthen our small support network, our small contingent of CSS families in both Australia and New Zealand plan to unite at a central location.  
 
 We want to create that first meeting moment for others...
       
We are proposing a conference to offer this opportunity and bring everyone together. Date and venue to be confirmed. It has thankfully generated a tremendous amount of support and excitement from all concerned, including our CSS families in New Zealand and research experts based in America.
 
 
The CSS family is passionate and motivated and with your support, we are determined to unite in a an inclusive and accessible space where we can share our experiences and learn from one another. I am sure you can appreciate the benefits of pursuing such a dream and we would greatly appreciate your support in turning this vision into a reality.

   
Thank you on behalf of my family and our extended Australasian CSS family.