Help me Spred awearness of Cystinosis a disorder affecting only 2,000 world wide.

Here is a Little About me.

My name is Marcus Graham I am 27 years old, I was diagnosed with Netropthic Cystinosis when I was 6 months old I was not expected to live much longer, at the time of my diagnosis not much was known about cystinosis in New Zealand. I Managed to beat all odds of an infant living with Cystinosis in New Zealand. it seemed like every time I went to the doctors growing up I was given a New life expectancy so i had to learn to adapt and accept that I may lose my life at any moment which is where I came up with the motto I live by "live each day as though it's your Last". I suffered from renal rickets growing up and as a result had a fear amount of surgeries to straighten my legs, I got bullied a lot and as a result never really had friends. in the year 2000 I got told that my kidney was losing the battel with Cystinosis I was fortunitly lucky that my Farther James Graham was a match and in 2001 he gave me the chance to have a better life, it was increddble how much my life changed after the transplant it was like a window of oppertunty had oppend up and all I wanted to do is seze every opertuntiy I was given, saddly being so young at the time I didn't understand the importince of taking my medication and in mid 2013- 2014 my Kidney failed I am now on Hemodiaylsis 4 times a week, My standerd of living has changed dramaticly.

I am looking for your Generous Donations to try to get to an international Cystinosis Conference in Berlin,

I am one of only 2000 people worldwide with Cystinosis and Being In New Zealand we get left out of many medications that are available to other countries. I am currently in the process of setting up a support group on Cystinosis in New Zealand so I can connect our families that have kids with cystinosis to the outside world and also help get funding for medication that is vital for people with Cystinosis.

with this trip my goal is to learn about new medications that are available and how Cystinosis effects Cystinosis patients as we grow older it will also give me and New Zealand doctors and Idea on our treatments compared to the rest of the world and the main point for me is how cystinosis effects males and families with pregnancy as one day I would like to have kids of my own.

Below is a Brief Description on Cystinosis More info can be found at https://www.facebook.com/groups/416132368827398/

Cystinosis is a rare, multisystem genetic disorder characterized by the accumulation of an amino acid called cystine in different tissues and organs of the body including the kidneys, eyes, muscles, liver, pancreas and brain. Generally, cystinosis is broken down into three different forms known as nephropathic cystinosis, intermediate cystinosis and non-nephropathic (or ocular) cystinosis. The age of onset, symptoms, and severity of cystinosis can vary greatly from one person to another. Nephropathic cystinosis presents in infancy and is the most common and severe form. Early detection and prompt treatment are critical in slowing the development and progression of symptoms associated with cystinosis. The kidneys and eyes are the two organs most often affected. Individuals with nephropathic or intermediate cystinosis ultimately require a kidney transplant. Non-nephropathic cystinosis only affects the corneas of the eyes. Cystinosis is caused by mutations of the CTNS gene and is inherited as an autosomal recessive disease.

Unfortunately with New Zealand being a small Country and there being only around 6 know cases of Cystinosis in New Zealand we get left out on some very important and potentially life saving treatment's and medicine that many countries get, My goal is to travel to cystinosis conference in Berlin and learn more about this disorder and how it affects people like my self as we get older and also bring back some valuable information that would also help to get New Zealand in line with other country's and try to find a cure.

Here is a link for more info on conference

https://www.cystinosis-conference-berlin-2018.eu/

July 13-15. Berlin Germany.

If you would like to know more please feel free to Facebook message me.

If we Cannot meet the Target of $25.000 we Need then any funds we do get will go on Setting the first New Zealand Cystinosis Foundation to support all our New Zealand families.

Once again any help is greatly appreciated and thank you in advance for your Donations.