Dan's Russian Reboot

17/02/2025

Happy 6th stemmie birthday to this guy and all our AHSCT friends around the world! While Dan enjoys the continued benefits of no disease activity, the sad reality is: young kiwis are still being diagnosed with this illness with no local access to the same treatment. If you’re in Dunedin this weekend you might like to attend a fundraiser to enable Em’s MS Journey to Mexico to access this life saving procedure 🇲🇽

22/12/2022

We’re approaching 4 years post transplant. Update on Dan: still no evidence of disease activity, still a giant dork

Daniel De Bono has been announced as the new Chief Executive of Dunedin Airport. He has been acting in the role since October 2022 and prior to that he was responsible for Operations and Infrastructure at Dunedin Airport. Daniel is Dunedin born and bred and is passionate about our great city and what it has to offer. He is looking forward to sharing this to the rest of NZ and the world.

06/05/2022

Let’s try to get this issue in front of decision makers by boosting signatures of Joan Perry’s petition to 10k!

At the time of sharing this article: 7047 signatures. With your help we can spread the word and try to help other kiwis with MS.

Stem cell treatment is available for certain cancers in Aotearoa, but people with multiple sclerosis must travel overseas and spend up to $100k.

26/02/2022

💔 Our hearts are broken for Ukrainian & Russian friends. Some of the most awesome people we’ve ever met, who never asked for war, yet will pay the ultimate price.

11/11/2021

Kia ora whānau near and far, it’s been a while. Dan recently hopped inside the MRI for the 10th time (3rd post transplant) for a full spine and brain scan. For now he’s decided to get one every 12 months just for peace of mind. The report came back… still no evidence of disease activity! So cheers to that and cheers to you all ♥️♥️♥️

26/05/2021

Despite overwhelming support and evidence provided to the Ministry of Health and relevant DHBs, considered to have the capacity and expertise to treat MS patients, aHSCT treatment is still unavailable in NZ 😩

Let’s do something about it. If like us, you want to see more kiwis with MS be given the same opportunity as Dan, without the enormous financial and emotional expense he endured, please sign this petition:

https://www.parliament.nz/en/pb/petitions/document/PET_109748/petition-of-joan-perry-provide-stem-cell-replacement-therapy

01/10/2020

We travelled to Moscow with the info and inspo we received from those who bravely went before us and now we get to pass it on. When you think about it instilling someone else with the hope that you have is probably the coolest thing we can do on this earth. If Dan’s MS story could be a part of yours, that’s just so incredible and truly inspires us to keep posting updates from time to time.

On that note please excuse the radio silence but Dan is all good! Make that great. His Dunedin neurologist has downscaled his EDSS (expanded disability status scale) score to a bloody zero! He left NZ as a 3.5 on a good day.

If you or someone you know is fundraising for this incredible treatment which is still unavailable publicly in Aotearoa or Australia please post their link below ✌🏻

07/03/2020

Can you believe it’s been a whole year since Dan’s Russian Reboot!? He had his 2nd MRI since, earlier in the week.....Yesterday we learnt there is still no evidence of disease activity. Today we climbed really high ❤️

“Maybe you’ve been assigned this mountain to show others it can be moved” - unknown

25/12/2019

Dear Santa: I already have everything I could possibly wish for this year. Got my family, good friends, love and no more MS. Please take care of those who need you. Thank you.

14/08/2019

Posting the kid to Moscow. Jokes just Dan’s MRI on CD. Dr F asks permission before you‘re discharged to share all future scans with him so he can firstly review results himself and get back to you and secondly, collate data as part of his longitudinal study that follows the progress of HSCT patients over time.

This November the hospital is hosting an international HSCT conference which will provide an excellent opportunity to share newly acquired knowledge in the field of stem cell transplantation for treatment of patients with autoimmune diseases like MS, discuss challenges and perspectives of the method, and develop collaborative projects and relationships with medical professionals all over the world. We’ll post a link for more conference info in the comments below incase you wanna tag your neuro 😉 or help spread the word.

11/08/2019

The results are in! And that Moscow magic seems to have done the trick. Not only is there NO evidence of disease activity (NEDA) in his brain or spine, but it would appear that a lesion around 5mm in diameter has disappeared!

Big shoutout to the Pacific Radiology team at Great King Street Dunedin for their professionalism and warmth pre and post Dan’s reboot. And for bringing the goods with their state of the art 3 Tesla MRI machine. It has a stronger magnet and makes better images of organs and soft tissue than other types of MRI do plus it’s what those brilliant doctors in Russia use.

06/08/2019

6 years ago tomorrow we looked into each other’s eyes, shaking with nerves and happiness and said “I do,” but in all fairness that younger, shinier, seemingly healthy version of ourselves probably didn’t understand what “in sickness and health” truly meant. Perhaps the marriage celebrant should have asked us...

Are you willing to watch the person you love the most in this world suffer physical and mental pain?

Are you willing to advocate for your partner when they have lost hope and when no one else can?

Are you willing to learn about the illness with your partner?

Are you willing to ask your friends and family for personal support?

Are you going to choose to love that person, even if you hate the illness?

Dan, we could never have predicted that years later we’d end up sharing the anniversary of our vows with your first brain and spinal scan post HSCT. And I know as you read this (probably from the MRI waiting room) that you’re anxious AF but if we were to time-travel back and make this couple aware of the ugly disease hiding in this very pretty photo, I’m confident they‘d both still answer yes to all of the above.

Happy anniversary, you got this ❤️