Hope for Alec: Sanfilippo Childrens Foundation | Non-profit organisation

Hope for Alec: Sanfilippo Childrens Foundation

Phone: 1800 664 878

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23.01.2022 Please join me in support of the Bevan family. Noah’s K9 fun run will be held on April 24th, 2021, from 1000am to 1300pm, which would also have been Noah’s 17t...h birthday. Come join the Bevan family, myself and Alec, at the Sandgate waterfront. Whether you have a dog or not, or virtually for people who are unable to attend on the day, in celebrating Noah’s birthday , and doing what Noah loved to do. Walk his dogs. There will be a Gift bag for each dog participating, and a memorial cap for the owner. 1st, 2nd and 3rd prizes for each category (2.5km or 5km) , and 12 amazing raffle prizes. There will be a sausage sizzle/drinks, fairy floss, popcorn, cake stall, face painting and balloon blowing and PET stock employees will be handing out some giveaways. ALL funds will be donated to the Sanfilippo children’s foundation which will be used to hopefully find a cure for this devastating Syndrome. No family should have to watch their child suffer from Sanfilippo syndrome, and lose a child so young, as the Bevan’s unfortunately have. Wear purple and ensure to register via the link provided. http://www.sanfilippo.org.au/noahsfunrun

19.01.2022 Today is Rare Disease Day #RDD2021 Rare children, just like Alec, are why we do what we do here at the Sanfilippo Children's Foundation Happy RDD 2021! "Rare is many. Rare is strong. Rare is proud."... There are over 300 million people worldwide living with a rare disease There are 6,000 known rare diseases 72% of rare diseases are genetic in origin 70% of rare diseases start in childhood #hopeforalec #rdd2021 #sanfilipposyndrome #RareDiseaseDay2021 #childhooddementia

08.01.2022 Hello my wonderful community - I have once again been given the fabulous opportunity of gathering a group volunteers help out with the medals and acting as fini...sher support at this years 2021 McDonalds Brisbane Marathon Festival. The Sanfilippo Children's Foundation will receive a small donation per person volunteering. The event is on the 5th of June and our support will be required from 7.00 or 8.00am till midday. There are 12 positions to fill. Please if you are interested - respond to this post and I will sign you up. Thanking you in advance #hopeforalec #mcdonaldsbrisbanemarathon #volunteers

03.01.2022 This story is the story of my family and our son Alec x. Connor has Sanfilippo type C - the raw honesty of Marissa and Mike is the truth that is often hidden by families who have children suffering from the devastating disease of a Sanfilippo Syndrome. I wish it were different, I wish I were intelligent enough to create a cure, I wish for a future for my son. Please share this post so that we can raise funds and awareness to ensure the right people have what they require to keep up the fight xx www.hopeforalec.com.au