Since we started testing Liora for Angelman Syndrome, we've made good friends around the world. Families like ours, with a kid (or two, or three...) that has Angelman Syndrome. One of them is the Uzan family. Ruchama Uzan and her husband have a boy with a mutation of the ube3a gene that causes Angelman Syndrome, just like Liora. They live in Toronto, Canada. Nadav, who is 7 years old, has three siblings, Na'ama, 5 years old, and twins, just short of 2 years old.
Last year, when talking to her parents, Na'ama asked about her brother struggles and how she could help. When her parents told her that what stands between us and a cure for Angelman Syndrome is MONEY, Na'ama decided to help. She wanted to host a lemonade stand to raise funds for FAST (Foundation for Angelman Syndrome Therapeutics). And, within a year, Na'ama had already raised over U$50.000! Na'ama was also chosen as "Canada's Kindest Kid", in an online voting contest held by Parents magazine, as you can see in this article. It was then that Na'ama's story caught the interest of the international media and it was published all over the world (as you can read here, here , here and here), also on the website of Época magazine, here in Brazil, in this article. Seeing there an opportunity to raise awareness for AS (Angelman Syndrome), Na'ama and her parents decided to launch "The International Challenge", where Na'ama called on AS siblings all over the world to host their own stands, raising funds for FAST and awareness for Angelman Syndrome. And Na'ama challenged Zion, Liora and Benjamin to host their stand. And for us, challenge made is a challenge ACCOMPLISHED!!! This is how we ended up hosting our first "Barraca de Limonada do Bem (Blessing Lemonade Stand)", in Rio de Janeiro, Brazil. That's how we named our stand in portuguese, as a part of the AS LemonAID Stand Initiative, that started all the way in Canada. I called Liora's and Benjamin's school office and asked if we could host our stand at their campus. And they loved the idea! So I called a carpenter and told him my "dream" stand (We live in Rio de Janeiro, a BIG city and the kids don't usually set up anything on their sidewalk, streets around here are very busy or very quiet. Ours is very quiet, it is a dead end street with less than 30 houses). So our stand had to be portable, so I could take it in my car anywhere, it had to be lightweight, but also robust to hold all the weight on top. And he made it come true! So, on Tuesday, June 2nd, 2015, we had our first "fundraising experience". Zion, my oldest, always wanted to help his sister somehow, and this was the perfect chance! We set up or stand inside the school, during pick up time. I made a poster explaining the initiative and the school shared with ALL parents via email. And the event was a SUCCESS!!!
We also sold in our stand, besides lemonade, iced tea and grape juice, cupcakes, brownies, cookies and mini apple pies. Every thing was homemade with a lot of love!
On June 21st, we did it again! We set up our stand at Liora's school "festa junina", a local event in Brazil. This time we raised a little less than the first one, but the results were still awesome! We raised almost 500 dollars, but we didn't do any "marketing" as we did on our first stand, so most people would just pay for what they bought because they didn't know the real purpose of our stand. But we did raise awareness to those that had never heard of AS and we had some "proposals" of partnerships. M. is one of Liora's classmates, and her birthday was coming up on the next weekend, so her mom called me on the day after the school event and said that she loved our stand and wanted to help spread awareness. So she ordered a total of 150 brownies for M.'s birthday party and we made a tag for the brownies with the AS LemonAID Initiative and FAST's logos, and the brownies were given when people left the party, so they were displayed on a big table with a poster explaining our initiative along with FAST's website, so people who wanted to donate could go online and do it. And we raised another U$250!!! The total amount raised to this day was U$1.400!!! And we are not done! Tomorrow we are hosting another stand, and there is a lot more coming that we will be sharing through Facebook and our blog! Our stand is a huge successand we are raising a lot of awareness for Angelman Syndrome! Well, this stand will bring a lot of joy and awareness in the near future! I''ll keep you all posted! Spread the love! Edited on July 8th: Our stand on July 5th was a huge success! We only had refreshments and we SOLD OUT! We could have done a lot better if we had more lemonade, grape juice and iced tea! But we still raised another U$300! So FAST, watch out for a new donation!
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Wow! We are so excited to have you on the #lemonAID team! You, your family, and your community are incredible! We SO appreciate your support for a cure! Liora, Nadav, and all individuals with Angelman Syndrome will be cured in their lifetimes with this kind of support! Big hugs from Canada!
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Carol AguiarSou mãe em tempo integral de tres crianças maravilhosas. Zion, Liora e Benjamin. Inscreva-se!Digite seu endereço de email para assinar este blog e receber notificações de novos posts por email.
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Fevereiro 2018
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