The Noah Jordan Foundation

Celebrating Rare Disease Day with a brilliant team at the Newcastle Mitochondrial Research Group, Newcastle University ?? ?? 300 million people worldwide live with a rare disease, of which 70% of genetic rare diseases start in childhood. Raising awareness and funding research into rare diseases is crucial. This #RareDiseaseDay, I am proud to be researching #mitochondrial disease! ?? The Noah Jordan Foundation, The Lily Foundation, Mito Foundation, The PolG Foundation, United Mitochondrial Disease Foundation, My Mito Mission, MitoWomen Network ?? (Thank you Valeria Di Leo for taking the picture!)

As we sadly approach the first anniversary of our dear son Noah’s death, and five months since the launch of the Noah Jordan Foundation, I just wanted to take this opportunity to say thank you from the bottom of my heart for your continued support. We fight together in hope of a brighter future for other children affected by these cruel diseases. Today sadly marks one year since we were told that that Noah had Alpers Syndrome, an incurable paediatric Mitochondrial disease for which there is currently no treatments or cure. As a result we were told he was going to die and there was nothing the medical professionals could do. It is a privilege to announce that to honour Noah and the other children gone too soon at the hands of this cruel diseases, in October this year, along with three of my friends, I will be trekking to Everest Base Camp. At 5,364m above sea level, I will be trekking the stairway to heaven, as part of their legacies and in their memory to raise much needed awareness and fund vital medical research. Today, I am here in the Italian Alps undertaking my first of many training treks. To support me on my expedition in Noah’s memory, please see my justgiving page details below. https://lnkd.in/emZySk8u The extinction of Mito, one stomp at a time. Thank you for your continued support. Ben (Noah’s dad) x #mitosaur?#ahs?#alpershuttenlochersyndrome?#polg#mitochondrial?#mito?#research?#mitochondria#mitochondrialsupport?#mitochondrialdisease#mitochondrialhealth?#raredisease?#rarediseases#mitochondrialdiseases?#careforrare?#rareisreal#geneticdisease?#donate?#nonprofit?#fundraising?#childloss#childdeath?#mitochondrialfunction?#rarediseaseconference#mitowarrior?#mitochondrialdna?#savealife?#mitocommunity#geneticdisease?#raiseforrare

Thank you for your families continued support Mike Baddeley as part of your beautiful little boys legacy. A huge thank you also to F&M Telecommunications Limited for supporting The Baddeley's and The Noah Jordan Foundation in hope of a brighter future for other children and their families affected by these cruel diseases.

Thank you from the bottom of our hearts Joseph Bado, Max Levy and team for taking on such an incredible challenge in Noah's memory in hope of a brighter future for other children and their families affected by these cruel diseases. We will be with you every step of the way! The extinction of Mito, one stomp at a time!

Welcome to The Noah Jordan Foundation ?? There are currently no treatments for Alpers Huttenlocher Syndrome. We are a paediatric mitochondrial disease charity set up following the death of our beloved son Noah earlier last year, to a rare terminal paediatric mitochondrial disease called Alpers Huttenlocher Syndrome. The Noah Jordan Foundation funds research to develop treatments and find a cure, for rare terminal paediatric mitochondrial diseases. The charity also raises awareness of these rare diseases and supports those affected. The Extinction of Mito, one Stomp at a Time… ?? Any donation, no matter how small, has a huge impact. For more information on how you can support our charity, please see our website (details below). Please also like, follow and share. Thank you in advance for supporting Noah’s legacy. Website: www.tnjf.org.uk Campaign: https://lnkd.in/ebDFKNYF Instagram: noahsfoundation Facebook: TheNoahJordanFoundation Email: [email protected] #mitosaur?#ahs?#alpershuttenlochersyndrome?#polg #mitochondrial?#mito?#research?#mitochondria #mitochondrialsupport?#mitochondrialdisease #mitochondrialhealth?#raredisease?#rarediseases?#awareness #mitochondrialdiseases?#careforrare?#rareisreal #geneticdisease?#charity?#donate?#nonprofit?#fundraising #childloss?#childdeath?#smallcharity #worldmitochondrialdiseaseweek?#follow?#getinvolved #WMDW?#mitoaware

2025 First Event Announcements! ???? Register your interest for a 2025 TNJF charity place now! Only a few places left! Great Bristol Run (Half Marathon - 11th May 2025) Great Manchester Run (Half Marathon - 18th May 2025) Great North Swim (1 mile (Lake Windemere) 13th - 15th June 2025) Great North Run (Newcastle - Half Marathon - 7th September 2025) Great South Run (Portsmouth - 10 miles - 19th October 2025) In doing so, you will be helping us raise essential funds to reach our ￡100,000 target to fund vital medical research. Support our small charity Free running vest or tshirt ￡50 registration fee per place ￡500 minimum fundraising commitment per place Will you become one of Noah’s Heroes? To register your interest, please email: [email protected] We will let you know as soon as possible if your place has been confirmed. Thank you for your continued support. Ben, Natasha, Freddie & Noah’s team x

We are incredibly privileged to announce that our 12 month sponsorship of the 'Darby End' family room at Ronald McDonald House Charities UK in Birmingham started yesterday. This was celebrated by the unveiling of the plaque by Sharon, one of the incredible staff that supported our family whilst we were there last year whilst Noah was critically ill. The ￡5,000 we have donated to Ronald McDonald House Charities funds 'Darby End' for a full year, allowing the incredible staff to house and support families like ours, whose children are critically ill at Birmingham Women's and Children's NHS Foundation Trust for protracted periods of time. We couldn't have done this without your support. From the bottom of our hearts, thank you. Noah's team #mitosaur #ahs #alpershuttenlochersyndrome #polg #mitochondrial #mito #research #mitochondria #mitochondrialsupport #mitochondrialdisease #mitochondrialhealth #raredisease #rarediseases #mitochondrialdiseases #careforrare #rareisreal #geneticdisease #donate #nonprofit #fundraising #childloss #childdeath #mitochondrialfunction #rarediseaseconference #mitowarrior #mitochondrialdna #savealife #mitocommunity #geneticdisease #RaiseForRare

Want to fundraise for The Noah Jordan Foundation? ?? This is one of Noah’s heroes, Aaron Wheatley, who earlier in August last year completed the incredible challenge of cycling from John O’Groats to Lands End (some 983 miles!) over 9 days for?The Noah Jordan Foundation?. He was supported by his young family and friends who followed him the length of the Country in all weather. His family raised an incredible ￡2,821! A massive thank you to the Wheatleys for supporting Noah’s legacy, it means more than we can say ?? To find out how you can help support the Stomp and complete your own fundraising event for TNJF just get in touch! The Noah Jordan Foundation funds research to develop treatments and find a cure, for rare terminal paediatric mitochondrial diseases. The charity also raises awareness of these rare diseases and supports those affected. The Extinction of Mito, one Stomp at a Time… ?? Any donation, no matter how small, has a huge impact. For more information on how you can support our charity, please see our website (details below). Please also like, follow and share. Thank you in advance for supporting Noah’s legacy. Website: www.tnjf.org.uk Instagram: noahsfoundation Facebook: TheNoahJordanFoundation Campaign: https://lnkd.in/ebDFKNYF Email: [email protected] #mitosaur?#ahs?#alpershuttenlochersyndrome?#polg #mitochondrial?#mito?#research?#mitochondria #mitochondrialsupport?#mitochondrialdisease #mitochondrialhealth?#raredisease?#rarediseases?#awareness #mitochondrialdiseases?#careforrare?#rareisreal #geneticdisease?#charity?#donate?#nonprofit?#fundraising #childloss?#childdeath?#smallcharity #worldmitochondrialdiseaseweek?#follow?#getinvolved #WMDW?#mitoaware

Just a Huge Thank You… ??????? ? A belated huge thank you to four of Noah’s heroes, Simon Stiggear, Jack Wheeler, Rachael McDonald & Kieran McDonald who earlier in October last year completed the Yorkshire Marathon to raise awareness and fundraise for the Noah Jordan Foundation.? ? Between them they raised over ￡7,000! What an absolutely incredible achievement! Not only that but they all achieved really impressive times too! ? ? A big thank you to them for running in memory of Noah and all those children and families affected by these awful diseases. We would also like to take this opportunity to thank everyone who kindly supported them too.? ? A big shout out also to our chief photographer Rosie Kenyon who kindly came along on the day to show her support and took some fantastic pictures!? ? For Noah ??? ? ? Would you like to fundraise for The Noah Jordan Foundation? ???? ??? To find out how you can help support the Stomp and complete your own fundraising event for TNJF just get in touch! ?? ?? The Noah Jordan Foundation funds research to develop treatments and find a cure, for rare terminal paediatric mitochondrial diseases. The charity also raises awareness of these rare diseases and supports those affected.????? ????? The Extinction of Mito, one Stomp at a Time… ??????? ????? Any donation, no matter how small, has a huge impact. ????? ????? For more information on how you can support our charity, please see our website (details below). ????? ????? Please also like, follow and share. Thank you in advance for supporting Noah’s legacy.???? ? Website: www.tnjf.org.uk???? Instagram: noahsfoundation???? Facebook: TheNoahJordanFoundation???? Email: [email protected]???? ???? #mitosaur #ahs #alpershuttenlochersyndrome #polg #mitochondrial #mito #research #mitochondria #mitochondrialsupport #mitochondrialdisease #mitochondrialhealth #raredisease #rarediseases #awareness #mitochondrialdiseases #careforrare #rareisreal #geneticdisease #charity #donate #nonprofit #fundraising #childloss #childdeath #smallcharity #worldmitochondrialdiseaseweek #follow #getinvolved #WMDW #mitoaware

Help us raise ￡100,000 to fund vital medical research via our ‘Remembering Noah’ campaign. ￡100,000 will directly fund a three year PHD research fellowship to be undertaken under the guidance of our charity medical advisors, one of which is the UK’s leading Professor of Paediatric Mitochondrial Medicine, working towards treatments and a cure for mitochondrial disease. With the guidance of our charity medical advisor Dr Laura Alexandra Smith, it will have a specific focus on Alper's Huttenlocher Syndrome, the disease that took Noah's life. Donate directly to our ‘Remembering Noah Campaign’, create your own fundraising challenge or event, or share Noah’s story to help us raise awareness. To support our campaign, or for further information, please visit: https://lnkd.in/ebDFKNYF Thank you for your continued support. Ben, Natasha, Freddie & Noah’s team x #mitosaur?#ahs?#alpershuttenlochersyndrome?#polg #mitochondrial?#mito?#research?#mitochondria #mitochondrialsupport?#mitochondrialdisease #mitochondrialhealth?#raredisease?#rarediseases #mitochondrialdiseases?#careforrare?#rareisreal #geneticdisease?#donate?#nonprofit?#fundraising?#childloss #childdeath?#mitochondrialfunction?#rarediseaseconference #mitowarrior?#mitochondrialdna?#savealife?#mitocommunity #geneticdisease?#raiseforrare