My blog featured on Specialchildren.about.com!!

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.

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.

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

Uplifting article

From Boston Public Schools:

Blind student – gifted violinist and computer programmer – graduates from Boston Latin School
Musical prodigy Albano Berberi of Roslindale, a visually impaired Albanian immigrant, will enroll in Wheaton College next year

June 12, 2008

BOSTON - Albano Berberi, a visually impaired student, arrived in Boston from Greece in 2001, a sixth grade student who spoke no English and was unable to read and write in Braille. This month, he is graduating from Boston Latin School as an accomplished violinist who has excelled in rigorous Advanced Placement (AP) coursework.

Determined to pursue his love of music and computers, Albano, whose family had immigrated to Greece from Albania when he was a child, quickly learned English and Braille, with the help from new assistive technology designed specifically for students who are visually impaired. In 10th grade, just four years after arriving in the U.S., Albano scored “Proficient” on the MCAS English exam and “Advanced” in MCAS Mathematics.

Albano, who lives in Roslindale, completed his senior year at Boston Latin School with a full course load that included College English, AP Music, AP Computer Science, French 4 Honors, and Pre-Calculus. Throughout high school, he devoted himself to music composition and performance while exploring his interest in computers as an academic subject and a hobby.

In the fall, Albano will enter Wheaton College, where he will major in music performance and writing, with a minor in computer science.

New Info and Websites

Frankie's EI teacher gave me a site to look over for IEP information, the Federation for Children with Special Needs. There is a lot of great resources on it. Frankie will be 2 and 1/2 in November, so the IEP seems to be looming, and I am interested in researching more about it.

The SHADE foundation is once again this year, doing the Skating in the Shade program in Massachusetts. Children and parents can skate for free in the peak sun hours. Click here for schedule.

For some updates on us, Frankie had showed some interest in the potty; wanting to go when he gets changed, actually going on it a few times, asking about it. So we are taking it slow right now, but it is another sign of how he is growing so much!
We also don't change him on his changing table, because he figured out how to climb up on it after his nap, much to my shock! So we took the bar off that made it a changing table and now use the floor as a changing area. Without the bar, he could not pull himself up while climbing. He is such a little monkey. : )

Gene Therapy

One of the things that was brought up at the Albinism group today was gene therapy. I had also read an article on it a few days ago.
From http://news.yahoo.com:

"The two teams of scientists, working separately, each tested gene replacement therapy in three patients with a form of a rare hereditary eye disease called Leber's congenital amaurosis. There's no treatment for the disease, which appears early in infancy and causes severe vision loss, especially at night."

Vision was improved with the gene therapy and there may eventually be therapies for other genetic eye conditions. Next week's group is going to be with a geneticist, so maybe there will be more insight on this.

First Legally Blind Governor

Today the first legally blind governor has taken office in New York! I am excited about this, it is such a positive step for visually impaired people, and awareness of vision impairments.

From CNN.com:
"Paterson, 53, who is the state's first African-American governor, is also New York's first legally blind governor.
'Let me reintroduce myself, I am David Paterson and I am the governor of New York State,' Paterson said to roaring applause.
He is a leading advocate for the visually and physically impaired. His 2004 speech at the Democratic National Convention marked the first time a visually impaired person addressed the convention. He is a member of the American Foundation for the Blind, serves as a member of the Democratic National Committee and is a board member of the Democratic Legislative Campaign Committee."