Hello everybody,

For those of you that don't know me, my name is Aja Aguirre. I am 31 years old from British Columbia, Canada and I have lived in Nottingham, UK for the last 7 years. In July of 2020, my family and I went through the traumatic experience of losing my 30 year old brother Xavier Aguirre to a rare disease called AL Amyloidosis. It happened very suddenly and although we now believe he had been sufffering from this disease for at least a year or two before passing, he was only diagnosed the week before we lost him forever. Having never heard of this disease prior to Xavier's diagnosis, losing him has ripped a massive hole in my entire family, and we will never be the same.

Amyloidosis is a rare disease that occurs when abnormal proteins called amyloid build up in various tissues and organs in the body, interfering with their normal function. The amyloid protein is produced in the bone marrow and can accumulate in any part of the body, including the heart, kidneys, liver, spleen, nervous system, and digestive tract. As with many rare diseases, there is no cure for AL Amyloidosis. However, if caught early, it can be treated and managed, which means that early intervention is crucial. If not treated the result can be devastating - as seen with my brother Xavier.

A couple of days after Xavier passed away on July 16, 2020, I made the decision to do a charity bike ride in his memory. The decision was a personal one, and I didn't have any specific plan or reasoning other than wanting to help with my own grief. I thought if I could raise awareness, and in turn raise money for research, maybe I could prevent this pain from happening to other families. I wanted so badly for this horrible feeling in me to go away, and it seemed like the only thing that might help would be to do something proactive. We set out as a family in July 2021 to complete this mission, which would see us cycling across Scotland and England - finishing on July 16th which would be the one year anniversary of Xavier's passing. What I didn't expect is for how successful this inaugural ride would turn out to be. It was so successful that we decided to make this an annual event. And thus, the creation of Xavier's Legacy and the Journey for X yearly Amyloidosis bike ride.

The maiden voyage of "Journey for X" entailed a 558 km trip from Glasgow's Celtic Park to Nottingham's Warhammer World. A tremendous success, this inaugural ride raised over £11,000.00 GBP which was then split between three entities. As the ride was in the UK, we donated the majority (£7,500.00 GBP) to the Royal Free Charity at the National Amyloidosis Center in London. The next sum was sent to USA's Mayo Clinic ($2,500.00 USD) and the final amount ($3,000.00 CAD) went directly into a Canadian Amyloidois research study conducted by Dr. Victor Zepaeda at the University of Calgary's Amyloidosis centre.

Following a successful debut the previous year, beautiful British Columbia was selected as the 2022 host country. The team embarked upon a 532 km trek departing from Whistler Mountain, island hopping Westward, and ending back at Xavier's high school in our home town of Burnaby. This edition of "Journey for X" hauled in $5,300.00 CAD, which has been donated to the VGH & UBC Hospital Foundation to go into research led by renowned cardiologist and Cardiac Amyloidosis specialist, Dr. Margot Davis. We also teamed up with the Royal Canadian Legion Branch 83 in South Burnaby, and through their support and additional fundraising we were able to establish a $1,500.00 per year nursing bursary at the British Columbia Institute of Technology (BCIT) in Xavier's name.

To follow the theme of cycling in a different country each year and raising money for Amyloidosis research efforts within that country, we have chosen Ireland as this year's host. There is some data to suggest that certain genetic mutations that cause Amyloidosis may be more prevalent in people of Irish descent, and particularly in the Gweedore area in the West of Ireland. This year's ride stretches from the Irish mainland's most northern point, Malin Head, to the breath-taking Cliffs of Moher. Any funds that we raise will stay in Ireland, and go directly into research just as the last two years have.

If you are interested in supporting our cause, we appreciate any and all donations. Equally important as well is to simply spread the word by sharing the link so that we may raise as much awareness about this horrible disease as we can. We do have a website as well as social media pages, where we provide updates about the bike ride and any other fundraising efforts that we have. I will included some links to those pages below, as well as links to our previous years fundraising pages. Xavier's full story can be found on our website, as well as detailed information and photos from previous rides. Thank you all for your ongoing support.

WEBSITE: amyloidosisjfx.wixsite.com/amyloidosisawareness

FACEBOOK: https://www.facebook.com/AmyloidosisAwarenessJourney

TWITTER: https://twitter.com/amyloidosisx?

INSTAGRAM: https://www.instagram.com/amyloidosis_awareness_x/

2021 FUNDRAISING PAGE: https://www.justgiving.com/crowdfunding/aja-aguirre-xroads-of-amyloidosis

2022 FUNDRAISING PAGE: https://www.justgiving.com/crowdfunding/journeyforx