Rare Trait Hope
#573 - 2768 W Broadway V6K 4P4 Vancouver, BC, Canada

HUGE thank you to @maddymah for hosting a charity ride for Rare Trait at SpinHouse this afternoon! We are so grateful for all your generous donations and for everyone who was able to attend. From all of us at RTHS, thank you so much for your kindness, Maddy

WE DID IT!!! NOW WE JUST NEED MORE MONEY TO FINISH PAYING FOR IT! DONATE NOW!!!... THE GENE THERAPY MANUFACTURING AGREEMENT HAS BEEN SIGNED AND PRODUCTION HAS STARTED!!! THIS IS MONUMENTAL! A HUGE STEP TOWARD THE CLINICAL TRIAL THAT WILL TREAT AGU KIDS LIKE THE ONES YOU SEE HERE. HELP US GIVE THEM AND OTHER CHILDREN HOPE!!!! DONATE NOW!!! HELP US!!! GO TO OUR BIO TO LINK TO RARE TRAIT HOPE SOCIETY IN CANADA IN AUSTRALIA GO TO #SAVE_TRISHA IN THE UNITED STATES GO TO HTTPS://WWW.RARETRAIT.COM #rarediseases #genetherapyNN

HE DID IT! #2Feet4Good RAN #500milesforraretrait over a 3 week period to raise money for #CureAGU!!! If you’re just tuning in now, Kevin from #2Feet4Good ran 500 miles to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease. With only a hand full of children world wide, we are desperately trying to raise money for a clinical trial to treat these loveable kids. To donate in the US, go to @2feet4good for links. Don’t let Kevin’s dedication and hard ...work go unnoticed! The US GoFundMe page will stay open for another week or so, so donate NOW! If you are in Australia, check out #Save_Trisha for links to donate and in Canada go to our bio for access to our GoFundMe, or, if you would like a tax receipt, go to our website. We need your help NOW! Kevin tells us that he is so excited to be able to finish this and really hopes to have made more people aware of AGU and the long and expensive road the families have to find a cure. The boys and Rosie came out to keep me company towards the end. And a huge thank you to Geoff and Jen for cycling a bunch of miles with me today. They are the family we met at this same campground last year and first introduced me to rare condition. Thank you everyone for the tremendous support and kind words throughout the event. It meant so much to me! Kevin, we have so enjoyed following your journey and are going to miss tuning in to read about your day. Thank you to your family for sharing you with us. From Rare Trait Hope Canada we love you and wish you all the best! And Geoff and Jan, THANK-YOU for introducing Rare Diseases to Kevin! Support the children Kevin is running for. Help us get to a clinical trial to treat AGU. The kids are counting on you! Thank you Kevin, for giving us hope!

@2Feet4Good is almost finished! 30 miles today takes the total to 475 MILES In 19 days of running #500milesforraretrait! Kevin tells us he had a decent run with a rainy start and temps in the 60’s (that’s Fahrenheit, folks, aka 15-20C ). Even though he found todays run difficult and slow, having to force himself to run everytime he stopped at a crosswalk or refuel, HE GOT IT DONE! If you’re just tuning in now, #2Feet4Good is running #500milesforraretrait to raise $5000US ...to #CureAGU, a rare and fatal neurodegenerative disease. With only a hand full of children world wide, we are desperately trying to raise money for a clinical trial to treat these loveable kids. Go to @2feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in Canada go to our bio. In Florida, Kevin gives a huge thank you to Jon & Solana from @callecruzfl for donating over $200 of their profit sales to our GoFundMe! Kevin wants any one travelling around TT Peace River in Florida USA this season to go support them and get some amazing food! Meanwhile, back in Vancouver, Canada we continue to support Kevin by dedicating our exercise to encourage Kevin. Mekdes and Sofya ran/walked 7miles and Mary-Ann dedicated her night cross country skiing workout to @2Feet4Good. Even the Canadian Geese went for a waddle! Support the children he is running for. Help us get to a clinical trial to treat AGU. The kids are counting on you! Thank you Kevin, for giving us hope! #running #charity #nonprofit #2feet4good #ultrarunning #500milesforraretrait #fulltimerv #rvliving #charityrun #raretraitforhope #travelingcharity #corosglobal #GeneTherapy

Kevin is in the final stretch after leaving another 25 miles on the road for a grand total of 445 miles toward #500milesforraretrait. 55 miles to go! He did another split shift today, starting with 18 miles, took a break to do some home schooling (wonder Dad too?) and then ran another 7 miles in the afternoon Florida sun. If you’re just tuning in now, #2Feet4Good is running #500milesforraretrait to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease. With... only a hand full of children world wide, we are desperately trying to raise money for a clinical trial to treat these loveable kids. Go to @2feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in Canada go to our bio. Support the children he is running for. Help us get to a clinical trial to treat AGU. The kids are counting on you! Thank you Kevin, for giving us hope!

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Kevin is in the final stretch as he logs another 20 miles for #500milesforraretrait. 80 miles to go! He did a split shift today, getting up early to run 13 miles, took a break with the family and then ran another 7 miles. If you’re just tuning in now, #2Feet4Good is running #500milesforraretrait to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease. With only a hand full of children world wide, we are desperately trying to raise money for a clinical trial... to treat these loveable kids. Go to @2feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in Canada go to our bio. The Florida weather has been making it easier for Kevin to get those final miles in, but he reports that the last couple days have been mentally tough. We want to send him a huge thank you with photos of some of the children, parents, and supporters that are sending Australian, Canadian and US love for this amazing fundraiser. Help Kevin help us! Donate today!!!! #running #charity #nonprofit #2feet4good #ultrarunning #500milesforraretrait #fulltimerv #rvliving #charityrun #raretraitforhope #travelingcharity #corosglobal

Day 16 of running and Kevin went a bit crazy, logging 30 miles to cross the 400 mile mark! Countdown has begun! 100 miles to go for the #500milesforraretrait fundraiser. If you’re just tuning in now, Kevin from #2Feet4Good is running #500milesforraretrait to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease. With only a hand full of children world wide, we are desperately trying to raise money for a clinical trial to treat these loveable kids. Go to @2...feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in Canada go to our bio. Today was a great running day for Kevin with a cool morning turning into a sunny afternoon. Back in Vancouver, Canada we are dedicating our workouts to Kevin. Kristina and Mekdes both donned their runners to keep Kevin company over 3000 miles away. Support Kevin! Donate what you can! No amount is too small! Dedicate your workout to him by sharing your photo with #2feet4good #running #charity #nonprofit #2feet4good #ultrarunning #500milesforraretrait #fulltimerv #rvliving #charityrun #raretraitforhope #travelingcharity #corosglobal #GeneTherapy Thanks for the continued support!

Day 15 adds another 20 miles to Kevin’s #500milesforraretrait fundraiser. If you’re just tuning in now, Kevin from #2Feet4Good is running #500milesforraretrait to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease. With only a hand full of children world wide, we are desperately trying to raise money for a clinical trial to treat these loveable kids. Go to @2feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in... Canada go to our bio. Kevin had a perfect weather day, and shared the beautiful sunrise with us. He reports that his right hip was a little irritated at the beginning of the run but seemed to loosen up and felt pretty good through the 2nd half. He enjoyed a much deserved mimosa at the end of his run. Back in Vancouver, Canada we are dedicating our workouts to Kevin to send our thanks and support. Today Mekdes dedicated her Zumba class and Mary-Ann walked 5 miles, getting a photo of a Canadian Goose on the way. Tomorrow Kevin will be taking a day off as he travels in his RV to his next destination to continue his running. Safe travels Kevin! Support Kevin! Donate what you can! No amount is too small! Dedicate your workout to him by sharing your photo with #2feet4good

Kevin from @2Feet4Good reports a chilly and windy day, but the sun was out so all was good. His left ankle is improving, but during the last 10miles of his 20 mile run his right hip began bothering him. For anyone that didn’t notice, we have to point out the weight in front of Kevin in the photo. Seriously? What is that about? Isn’t running 20 miles enough of a workout for you? If you’re just tuning in now, Kevin from #2Feet4Good is running #500milesforraretrait to raise... $5000US to #CureAGU, a rare and fatal neurodegenerative disease. With only a hand full of children world wide, we are desperately trying to raise money for a clinical trial to treat these loveable kids. Go to @2feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in Canada go to our bio. We are dedicating our workouts to Kevin to send our thanks and support. Today both Mekdes and Mary-Ann did 5 miles for Kevin. Mekdes shares her rainbow day and seagull friend, and Mary-Ann shares the Vancouver Science World landmark. Also, some strange friend she met on the way. Support Kevin! Donate what you can! No amount is too small! Dedicate your workout to him by sharing your photo with #2feet4good See more

Day 13 saw Kevin put another 20 miles under his belt. Headwinds worked against him today, but once he donned his lucky buff from @shenipsitstriders he found his groove. @2Feet4Good is running to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease, with only a hand full of children stricken with it world wide, and we are desperately trying to raise money for a clinical trial to treat these loveable kids. Go to @2feet4good to learn how to donate in the US. If ...you are in Australia, check out #Save_Trisha, and in Canada go to our bio. Mekdes once again ran to support #2Feet4Good and this time her friend Sofya joined her. Mekdes is getting in great shape thanks to the inspiration of #2Feet4Good! Dedicate your workout to Kevin, take a photo and tag #2Feet4Good. Send some love and energy. Donate! No amount is too little! #fulltimerv #rvliving #charityrun #raretraitforhope #travelingcharity #corosglobal #running #charity #nonprofit #2feet4good #ultrarunning #GeneTherapy See more

Today marks day 12 of running #500milesforraretrait and Kevin from @2Feet4Good reached 310 miles! For those following in Canada and Australia, that's 500 kilometers! All this to raise $5000US to #CureAGU, a rare and fatal neurodegenerative disease. Go to @2feet4good to learn how to donate in the US. If you are in Australia, check out #Save_Trisha, and in Canada go to our bio. Makeda from Vancouver has AGU, so her 2 friends Ciparin and Merodin walked in support of Kevin today. Mary-Ann dedicated her cross-country ski workout to him, and Makeda once again ran to support #2Feet4Good. Dedicate your workout to Kevin, take a photo and tag #2Feet4Good. Send some love and energy. #fulltimerv #rvliving #charityrun #raretraitforhope #travelingcharity #corosglobal #running #charity #nonprofit #2feet4good #ultrarunning #GeneTherapy

On day 11 Kevin from @2Feet4Good logged an additional 20 miles for a total of 290 MILES! He met a manatee for the second day, and then cooled himself off in the waters. Meanwhile up in Vancouver Canada, Mekdes logged another 6 miles in support of Kevin and met a few bunny rabbits on the way. Barbara dedicated her workout, sweating it out in the gym. We are thinking of Kevin everyday as he support Rare Trait Hope by running #500milesforraretrait. Go to #2Feet4Good to learn ho...w to donate to his US fundraiser. If you are in Canada, check out our bio, and in Australia go to the linktr.eesavetrisha @vandanasawhney24 to donate there. Say "this one's for you @2Feet4Good so he feels our love as he tries to raise $5000US for the #CureAGU clinical trial. This is a global cause to help treat a handful of children affected around the world. Every penny counts! See more

Today Trisha and her sister Samika are sending love and thank-yous from Australia, as @2Feet4Good continues it's fundraising #500milesforraretrait to raise money and awareness for #CureAGU. AGU is so rare that Trisha is the only child in Australia to have this heartbreaking fatal neurodegenerative disease. Check out her story and donate at https://savetrisha.com.au/savetrisha/ or #savetrisha. If you live in the US and want to help Kevin help Trisha and children like her, go to #2Feet4Good to learn more by clicking on the linktr.ee/2feet. If you're in Canada go to our bio and find out how to donate. Thank you! Share our story! Share @2Feet4Good story

Hello everyone! We want to take this opportunity to thank our friends at Vancouver Best Cookies for their support over the holiday season. Between everyone who purchased cookies through their fundraiser and those who made donations tied to the cookie campaign, we raised over $2,000! We are so grateful for everyone’s generosity. In addition, Vancouver Best Cookies is continuing the fundraiser to #saveMakeda, so please spread the word about their delicious cookies and buy some treats! Your tummy will thank you and so will everyone who loves Makeda! Through continued fundraising and with your help we will be able to fund that clinical trial that will allow Makeda to live the long, full life she deserves.

Happy New Year everyone! Thank you to those who have helped support our fundraiser to #savemakeda. We are so appreciative, but the fight isn't over yet! We need to continue to raise funds so we can get this show on the road and #cureagu. We want to watch Makeda graduate, walk down the aisle one day, and have a family of her own if she chooses. Please continue to share our story, and lets make 2021 the year that we hear the words "we have found the cure." Wishing everyone a healthy, joyous, prosperous 2021!

Merriest of Christmases from all of us at Rare Trait Hope. We hope you all had a joyous and safe Christmas Day and Boxing Day.

To all our wonderful followers, donors, friends and families... Heartfelt thanks for all your support in helping us fight for Makeda and other kids like her. May all the best of the season visit you and your families--and here's to a healthy, happy, and joyful 2021! With Gratitude,... The Rare Trait Hope Team. #CureAGU #LetsFundHope

Our wonderful friends at Vancouver Best Cookies have posted a truly lovely and inspiring note about our Makeda today! They are supporting our efforts to #CureAGU by giving us net proceeds from every 'Makeda' box of cookies your order between now and December 31 (Deliveries from Dec 26-Jan 7). Hit the picture below and order today! #LetsFundHope ... (Please share this post, too! Thank you!) See more

Well ... winter solstice is upon us tomorrow. I look forward to it each year because it means that the days will start getting longer. Despite the fact that winter is technically just beginning, I tell myself that once we cross over Dec 21st we are rapidly on our way towards spring. I may just be pulling the wool over my own eyes, but whatever it takes to feel like I’m closer to spring which means I’m closer to receiving a vaccine, and therefore closer to being able to hug m...y parents, son, sister and nieces, right? (To be clear, I already hug my daughters. They live with me right now ) We will also be that much closer to the clinical trial for which we are receiving generous donations but still need to raise so much more. I want 2021 to be the year that Makeda’s life is saved. Now wouldn’t THAT make up for a less than stellar 2020???!!! Please continue to share our posts and get the word out about our sweet girl who is counting on the rest of the world to save her life and give her the time she needs to do great things for our world in the future. #savemakeda #agu #share #donate. Www.raretraithope.ca

Hey Vancouver area friends - here’s a feel good combo - eat yummy cookies and help a good cause! Please share!

"Eat Goodies...Do Good!" Hello Friends, Can you help us help Makeda and other kids suffering with AGU?... Our wonderful friends at VANCOUVER BEST COOKIES have generously offered up a Holiday Fundraiser that's as sweet as our girl! Each box of 6 that you order of their delectable hand-made cookies, means THEY WILL DONATE $9 PER BOX back to our Rare Trait Hope charity that will fund a cure for AGU! *Orders taken from today to December 31st, 2020. *Deliveries between December 26th - January 7th, 2021. (Free delivery to Vancouver, Burnaby and Richmond!). Get all of the holiday yumminess with none of the hassle! Many thanks to VBC owners Daniella Ang and Lilly Keung for sharing the Holiday Spirit. (Click on the pic below to order!)