I posted the article, earlier in the week, about the Roy family who is trying to get an American Girl doll made with albinism! Frankie and Kalli met each other at Perkins school a few years back and we had gone to the Big Apple Circus with them, as well.
Please consider writing a letter and sending it to vote4kalli@gmail.com
Here is the post from specialchildren.about.com that mentions the family and my blog post about them!!
http://specialchildren.about.com/b/2011/01/06/girls-lobbying-for-american-girl-doll-with-albinism.htm?r=et
Terri's Special Children Blog
By Terri Mauro, About.com Guide since 2004
Girls Lobbying for American Girl Doll With Albinism
Thursday January 6, 2011
Get Involved: How cool would an American Girl doll with albinism be? One Massachusetts family is trying to find out. According to a post on the blog Parenting, Albinism and Boston Kids' Activities, Kalli Roy would like to have a customized doll just like her sisters do, but because she has albinism, that's going to involve a little more than selecting from the usual hair and eye color choices. Her sisters have started a letter-writing campaign to get the American Girl company to create a doll for Kalli and others like her -- a doll that could also send the message that kids with albinism are just kids, not some evil character from a movie. If you'd like to join their campaign, the blog post suggests sending your letter to vote4kalli@gmail.com.
Showing posts with label Albinism Awareness. Show all posts
Showing posts with label Albinism Awareness. Show all posts
Saturday, January 8, 2011
Wednesday, January 5, 2011
Send a Letter to American Girl!!
We have met Kalli at Perkins, she is Frankie's age! Please consider writing a letter, Lizzy is working on hers now!
January 5, 2011
Salem sisters work to 'cure ignorance'
By Jillian Jorgensen
jjorgensen@eagletribune.com The Eagle Tribune Wed Jan 05, 2011, 12:16 AM EST
SALEM — Kalli Roy's two older sisters have American Girl dolls customized to look just like them. But getting one for Kalli is more difficult than picking out the right facial details from the doll catalog.
Kalli, 4, has albinism, an inherited genetic condition that means she has little or no pigment in her eyes, skin or hair. Her eyes appear violet and her vision is impaired, but that didn't stop her from sprinting around her house one recent evening.
Her sisters, Kaila, 10, and Kiana, 8, got the idea to ask the American Girl company to make a doll that looks like their sister. But their request isn't just so their sister could have a familiar toy.
They want "to cure ignorance," Kaila said.
The dolls come with books telling the tales of pre-teens from various points in history through the modern day. The girls hope a "Kalli Frances" doll and book would educate those who sometimes stare at Kalli or make mean comments.
At a summer camp, Kiana and Kaila were playing with a boy they had just met. They asked if he wanted to play with their sister, too.
"He said, 'No, she's a freak. She doesn't look like us. We can't play with her,'" Kiana said.
"Did I cry?" Kalli asked, from the other side of the table.
Kiana told Kalli she didn't cry, because she hadn't heard the exchange.
"What do you say when people stare at you or say bad things?" the girls' mother, Tricia, asked Kalli.
"I'm fabulous," Kalli replied.
The girls decided to contact American Girl on their own, Tricia Roy said, and the company urged them to send in a letter about their little sister. But Kaila and Kiana had bigger ideas.
"We didn't want to just send in two or three letters from the family," Kiana said.
So, the two of them approached their principal at Lancaster School to see if they could ask fellow students to write letters. The school went above and beyond, Tricia Roy said, bringing in guidance counselors to talk to each class about albinism and then letting students write letters to the company during lunch. Kalli went to the school that day to answer questions from students.
"We had over 40 letters from the school and staff," Kiana said.
Tricia Roy also posted the girl's mission on Facebook and message boards for people with albinism, their families and friends. She has received letters from people nationwide and even outside the country.
"Everyone stares at Kalli and if we make an American Girl doll, it'll help them answer the questions that they're too afraid to ask because they think they're too personal," Kiana said.
But the doll could help people understand that Kalli is, with some slight help, able to live like any other 4-year-old. She uses a walking stick, and has to wear sunblock and sunglasses whenever she's outside.
But she goes to the beach with the help of a full-body bathing suit and a sun hat, and can run throughout her own home because she's memorized where everything is.
"She's smart as a whip and runs through life like any 4-year-old," Tricia Roy said.
She dances and is learning gymnastics from Kiana. She also is learning to play the piano.
"She played "Jingle Bells" in the Christmas recital," Roy said.
Just seconds later, Kalli was gone in a bright blur and "Jingle Bells" was coming from the piano a few rooms over. That's the Kalli her sisters want people to know — a girl who can do just about anything and is fun to be around, rather than some of the preconceived notions about albinism.
"All the movies that have a person with albinism, they show them being evil," Kaila said.
And for Kalli, who uses the term "sunglass kid" rather than albino to describe herself, the idea of having a doll like her is a pretty great one.
As her mother asked what a Kalli Frances doll would come with, Kalli ticked off some of her own accessories: a bright yellow dress, sunglasses, a walking stick, "a bathing suit like mine and beach socks."
Father Dave said his daughters are like second mothers.
"What's really nice is they include her in everything," he said.
And their mother has already told the girls it isn't about the end result. Even if the doll never gets made, they've already raised awareness in their school and in their community, among the people Kalli will know as she grows up.
That will help make Kalli's interactions with people easier, Tricia Roy said, even if it doesn't completely cure ignorance as they've hoped.
"What they're asking for from the world, I don't know if it'll ever really happen," Tricia Roy said. "But just knowing they think it's possible is enough for me."
Letters in support of the doll can be e-mailed to vote4kalli@gmail.com.
January 5, 2011
Salem sisters work to 'cure ignorance'
By Jillian Jorgensen
jjorgensen@eagletribune.com The Eagle Tribune Wed Jan 05, 2011, 12:16 AM EST
SALEM — Kalli Roy's two older sisters have American Girl dolls customized to look just like them. But getting one for Kalli is more difficult than picking out the right facial details from the doll catalog.
Kalli, 4, has albinism, an inherited genetic condition that means she has little or no pigment in her eyes, skin or hair. Her eyes appear violet and her vision is impaired, but that didn't stop her from sprinting around her house one recent evening.
Her sisters, Kaila, 10, and Kiana, 8, got the idea to ask the American Girl company to make a doll that looks like their sister. But their request isn't just so their sister could have a familiar toy.
They want "to cure ignorance," Kaila said.
The dolls come with books telling the tales of pre-teens from various points in history through the modern day. The girls hope a "Kalli Frances" doll and book would educate those who sometimes stare at Kalli or make mean comments.
At a summer camp, Kiana and Kaila were playing with a boy they had just met. They asked if he wanted to play with their sister, too.
"He said, 'No, she's a freak. She doesn't look like us. We can't play with her,'" Kiana said.
"Did I cry?" Kalli asked, from the other side of the table.
Kiana told Kalli she didn't cry, because she hadn't heard the exchange.
"What do you say when people stare at you or say bad things?" the girls' mother, Tricia, asked Kalli.
"I'm fabulous," Kalli replied.
The girls decided to contact American Girl on their own, Tricia Roy said, and the company urged them to send in a letter about their little sister. But Kaila and Kiana had bigger ideas.
"We didn't want to just send in two or three letters from the family," Kiana said.
So, the two of them approached their principal at Lancaster School to see if they could ask fellow students to write letters. The school went above and beyond, Tricia Roy said, bringing in guidance counselors to talk to each class about albinism and then letting students write letters to the company during lunch. Kalli went to the school that day to answer questions from students.
"We had over 40 letters from the school and staff," Kiana said.
Tricia Roy also posted the girl's mission on Facebook and message boards for people with albinism, their families and friends. She has received letters from people nationwide and even outside the country.
"Everyone stares at Kalli and if we make an American Girl doll, it'll help them answer the questions that they're too afraid to ask because they think they're too personal," Kiana said.
But the doll could help people understand that Kalli is, with some slight help, able to live like any other 4-year-old. She uses a walking stick, and has to wear sunblock and sunglasses whenever she's outside.
But she goes to the beach with the help of a full-body bathing suit and a sun hat, and can run throughout her own home because she's memorized where everything is.
"She's smart as a whip and runs through life like any 4-year-old," Tricia Roy said.
She dances and is learning gymnastics from Kiana. She also is learning to play the piano.
"She played "Jingle Bells" in the Christmas recital," Roy said.
Just seconds later, Kalli was gone in a bright blur and "Jingle Bells" was coming from the piano a few rooms over. That's the Kalli her sisters want people to know — a girl who can do just about anything and is fun to be around, rather than some of the preconceived notions about albinism.
"All the movies that have a person with albinism, they show them being evil," Kaila said.
And for Kalli, who uses the term "sunglass kid" rather than albino to describe herself, the idea of having a doll like her is a pretty great one.
As her mother asked what a Kalli Frances doll would come with, Kalli ticked off some of her own accessories: a bright yellow dress, sunglasses, a walking stick, "a bathing suit like mine and beach socks."
Father Dave said his daughters are like second mothers.
"What's really nice is they include her in everything," he said.
And their mother has already told the girls it isn't about the end result. Even if the doll never gets made, they've already raised awareness in their school and in their community, among the people Kalli will know as she grows up.
That will help make Kalli's interactions with people easier, Tricia Roy said, even if it doesn't completely cure ignorance as they've hoped.
"What they're asking for from the world, I don't know if it'll ever really happen," Tricia Roy said. "But just knowing they think it's possible is enough for me."
Letters in support of the doll can be e-mailed to vote4kalli@gmail.com.
Sunday, February 21, 2010
NOAH Bowl-a-thon 2010
We enjoyed our annual bowl-a-thon yesterday, with 65 people bowling together!! We had 5 children and 1 adult with albinism, some old friends and new ones! It was great to have so many people together for a common goal!!
It is great for me to get to talk to other people who have albinism and who's kids have albinism! They understand the sun issues, doctors appointments, school struggles, but most of all how much people with albinism can do!
Thanks to all who came out to bowl and donated to NOAH!
It is great for me to get to talk to other people who have albinism and who's kids have albinism! They understand the sun issues, doctors appointments, school struggles, but most of all how much people with albinism can do!
Thanks to all who came out to bowl and donated to NOAH!
Friday, October 2, 2009
Albinism on 20/20
Please watch in support of Frankie!!
20/20 Special: Overcoming Social Stigma of Albinism, Friday, October 2nd at 10pm
Visit http://abcnews.go.com/2020 for the latest information.
20/20 Special: Overcoming Social Stigma of Albinism, Friday, October 2nd at 10pm
Visit http://abcnews.go.com/2020 for the latest information.
Saturday, September 27, 2008
I Received this Email From NOAH . . .
Dear member of the Albinism Community:
It is unprecedented for NOAH leadership to communicate with you in this way. However, this situation is dire and we believe you would want us to let you know. We write to advise you of disturbing human rights violations against people with albinism in Tanzania that call out for action by the world wide albinism community.
Tanzania is in East Africa. Recent reports published by BBC News tell of the murders of persons with albinism, including children, on the orders of witchdoctors peddling the belief that potions made from the legs, hair, hands, and blood of people with albinism can make a person rich.
People with albinism are being savagely hunted for their body parts. Official numbers say that 28 persons with albinism have been brutally murdered in the last 18 months. Sources within the albinism community there say the number of murders is much higher - perhaps closer to 60. The youngest victim so far is a 7 month old baby.
There is also evidence now that this practice is spreading beyond the borders of Tanzania. Two persons with albinism were brutally murdered in Kenya, and even more shocking there was a recent arrest of a man in The Democratic Republic of The Congo. The man was arrested because he was found to be transporting the head of a person with albinism. He told police he was bringing it to sell to a businessman, and that he was going to be paid by weight.
Into this crisis, an organization called "The Under The Same Sun Fund" enters.
The Under The Same Sun Fund is a Canadian nonprofit organization headed up by Peter Ash. Peter is a person with albinism, who is also a business leader and member of NOAH.
The Under The Same Sun team will travel with Rick Guidotti of Positive Exposure to Tanzania on a mission of mercy and education in October. They want to see how they can be of help to the albinism community there.
The Executive Committee of NOAH fully supports Mr. Guidotti, Mr. Ash and Under the Same Sun in their efforts and ask that you read the following information from Under the Same Sun and consider lending your support by reading and signing the online petition.
Your small gesture of support will make a difference. Please help today.
NOAH Executive Committee
Under the Same Sun Fund
"Our People" - persons with albinism in Tanzania are suffering and we need to do whatever we can to help. All of the details of the project are explained on the Under the Same Sun website:
www.underthesamesun.com
After you have taken a few moments to understand the issues I am asking you to DO TWO SIMPLE THINGS to help those living in fear of this unspeakable evil in Tanzania.
1. Please sign the petition on the website.
2. Email as many people as possible and ask them to do the same - sign the petition. Email everyone you can think of.
When we are in Tanzania during the week of October 21st it is likely that the team will meet with senior government officials, possibly the president of the country. When the team meets with such officials they want to be able to hand them a copy of a petition with thousands of names from around the world - imploring their government to convict the killers and provide protection to people with albinism.
So, please, take a moment now - go to the website - sign the petition and then email as many people as possible asking them to do the same! People you know from other countries are great as well. We want to show that people from around the world are deeply concerned.
Thank you for acting on behalf of Our People - our brothers and sisters with albinism,
Peter Ash
Under the Same Sun Fund
www.underthesamesun.com, www.positiveexposure.org, www.albinism.org
Wednesday, June 4, 2008
Thank you, Rick!
I did get to see Rick Guidotti last week at Perkins. So inspiring how he goes around the world promoting difference as beautiful!
Thank you Rick for seeing the beauty in everyone! For being so full of energy, enthusiasm and
kindness. Your warmth and love towards others is apparent immediately and lights up a room. As soon as we saw you last week, you immediately remembered us and talked to Frankie. We need more people in the world like you and working as hard as you do to promote goodness and harmony among so many different people. Thank you!
Thank you Rick for seeing the beauty in everyone! For being so full of energy, enthusiasm and
kindness. Your warmth and love towards others is apparent immediately and lights up a room. As soon as we saw you last week, you immediately remembered us and talked to Frankie. We need more people in the world like you and working as hard as you do to promote goodness and harmony among so many different people. Thank you!
Friday, May 16, 2008
Celebrating Difference
Rick Guidotti, of Positive Exposure, received a humanitarian award on Thursday, May 15th, 2008, In NYC. My parents had the pleasure of going last night and meeting Rick for the first time. He is such a wonderful, caring person, who does such good for others. He is an inspiration and a fun person to meet. He is so full of energy! Of course, they were excited to meet him and my mom called me first thing this morning. He remembered meeting Frankie and Lizzy last year at Perkins and has some great pictures he took of them.
My parents met some other wonderful people who had children with albinism, or who had it themselves. My mom has emails from all of them to give to me, so I can chat with them and ask any questions. She expressed how nice everyone was and how welcoming!
I am really excited to see Rick again at Perkins in a few weeks!
My parents met some other wonderful people who had children with albinism, or who had it themselves. My mom has emails from all of them to give to me, so I can chat with them and ask any questions. She expressed how nice everyone was and how welcoming!
I am really excited to see Rick again at Perkins in a few weeks!
Monday, March 10, 2008
Perception is not Reality
A fellow mom of a child with albinism did this great albinism awareness video! Check it out!
For those of you who know him, see if you can find Frankie!
For those of you who know him, see if you can find Frankie!
Subscribe to:
Posts (Atom)