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Atacama Crossing Blogs 2025
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PostAtacama Crossing (2025) blog posts from Jacqueline Furniss
24 March 2025 04:39 pm (GMT) Greenwich Mean Time: Dublin, Edinburgh, Lisbon, London
It has been 15y since I ran a race, and despite a lot of training and preparation over the past 6m there is still that film of terror in my heart like PTSD from the dunes in Namibia, or my contorted IT Band in Sahara. But I have always dreamt of finishing the Racing The Planet series, and my husband and partner in all things called it- now is the time Jacqueline. Thank you to everyone who has been so supportive - some of you for my entire life (Dad, Mom in the great beyond) but also my children, my Nixon-Furniss Family and of course everyone that stands by me, as a close friend, an old friend, or a new acquaintance you likely have no idea how your simple kindness, a gesture, it all serves as encouragement in ways that fill me with positive energy so Thank You. Follow me in the Atacama Desert 250km race…. Bib#49 on this link here https://www.racingtheplanet.com/atacamacrossing/live And PLEASE send me an email- there is a link in my race profile. Every "KEEP GOING" message even from strangers, fuel me when I am at my lowest. Look for more posts throughout the race. Wish me luck! Xx Jacqueline
I have more thank yous for another entry- but for now; since many of you have asked to sponsor me, I am providing you with some options in different currencies. Most of these are centered around research and advocacy in Rare Diseases. Someone in our family has a rare disease, and I am sure you know someone who does too. Rare diseases affect between 3.5% (263 million) and 5.9% (446 million) of the global population (that we know of). Sadly, this population struggles to receive a diagnosis, treatment or meet another with the same condition. In addition, the study of rare diseases will frequently unlock mysteries to more prevalent disease pathways and therefore has resonating impacts on tens-of-millions of additional patients suffering with more common chronic conditions. There is no downside to more research and support of Rare Conditions.
The time to expand our funding into Rare is HERE- NOW. To satisfy the international network of support amongst us, I am listing a few UK, USA and one very special Hong Kong outreach centre. I hope that if you support my effort in the Atacama Desert you might express this through a donation to one of these carefully selected orgs below. Thank you for believing in me and helping me pay it forward.
BEACON rare disease patient communities
Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone.
Our charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. We help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients. Patient groups are a lifeline for those living with a rare disease. They provide emotional support and advice for day-to-day living. Patient groups are the impetus behind new care pathways and treatments.
https://www.rarebeacon.org/support-us/donate/
Rare Disease UK *select the 'Rare Disease' campaign on the Genetic Alliance donation page
Genomic Research / Rare Disease UK has delivered the tools to diagnose many rare conditions quickly and effectively. If people living with genetic conditions and their families are to benefit from this technology, genomic medicine services in the NHS need to deliver diagnostic and clinical services fairly and efficiently. Genetic Alliance UK is a voice for everyone affected by rare genetic conditions in the development of these services across the UK.
https://geneticalliance.org.uk/donate/
The National Organization for Rare Disorders (NORD) is a nonprofit voluntary health agency that serves as a clearinghouse for information on rare disorders. A rare disorder is a disease or condition that affects fewer than 200,000 Americans. Cumulatively, there are more than 7,000 rare diseases affecting more than 30 million Americans. NORD is committed to the identification, treatment, and cure of rare diseases through education, advocacy, research, policy, and community. NORD administers patients and caregiver assistance programs and supports research grants and collaborations. Give.org rates this charity as having very low admin/ a very high percentage of fundraising goes direct to research & patients.
https://rarediseases.org/donate-nord/
Maggie’s Cancer Caring Centre is here to provide a uniquely designed environment through professional assistance and social support, including practical, emotional and psychosocial services to people affected by cancer and their family, friends and carers, which can improve their quality of life to living with and beyond cancer.As an independent charity, we rely solely on public donations to keep our doors open. It helps Maggie’s Centre remain a haven of support to anyone who needs comfort, advice or simply a friendly face in their greatest hour of need. No referral or pre-registration is needed.
Donations of HK$100 or above are tax deductible
https://www.maggiescentre.org.hk/en/how-you-can-help/one-off-monthly-donation
Want to learn more about how impactful research and patient advocacy has been to tackling disease overall? Check out this paper: A 30-year retrospective: National Organization for Rare Disorders, the Orphan Drug Act, and the role of rare disease patient advocacy groups
https://www.dovepress.com/article/download/15846
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