Thank you Western Beef!

Foundation for Angelman Syndrome Therapeutics (FAST) Makes Great Strides in Driving Awareness and Raising Research Funding

Click the above article to read about the astounding support that Western Beef is giving to FAST. Please support Western Beef if they are in your area. If you are a parent, grandparent, sibling, aunt, uncle, cousin, or just a fan of a child with Angelman Syndrome, this is such a wonderful blessing to us all!!

As you can see from the article the partnership with Western Beef, via the Castellana family, is an unprecedented effort to assist the Foundation for Angelman Syndrome Therapeutics in raising the desperately needed funds to further vital research.

Imagine a day when our children will never again suffer from seizures. Imagine a day when each can walk, not needing their wheelchair/walker. THEN Imagine a day when another child born with Angelman Syndrome will never experience seizures, when NO Angelman child will ever again be forced into a drug induced coma just to stop the seizures that ravage his/her body, or have to experience the physical struggles and sleepless nights.

Because of people/companies, like Western Beef, this CAN happen! It just amazes me that someone that has no connection to Angelman Syndrome, does something like this. We are such a little known syndrome, but people like this really give me so much hope; hope for a CURE!

Love one another!~Yvonne

Just some fun...

FAST Gala

Hubby and I, with Colin Farrell, at the 2010 FAST Gala (Foundation for Angelman Syndrome Therapeutics)

Angels on Earth

My dear friend, and "Angel" mama, Kelly Ellison, has started a new business. Angels on Earth is her new online store. You will find the coolest Angel t-shirts I've ever seen, in men's, women's and children's sizes.

Kelly also has Angels on Earth coffee mugs, Angel earrings and necklaces. You can also purchase Angels and Idols, a fabulous book written by "Angel" dad and songwriter, Regie Hamm. 

Liquid melatonin is also available, for those who have sleepless nights with their AS kids! Kelly is dedicated to raising awareness for Angelman Syndrome!! New products will be added all the time that are useful for our kids and "parent reccomended"! 

Kelly's little "angel" Kiano

The Angelman Syndrome awareness video that Kelly made:

Story of the Winfreys and their special needs child, Ian, who has Angelman Syndrome

Winfrey's Story from Jonathan Whitney on Vimeo.


BEAUTIFUL testimony!!!!

Danny Gokey & more at Bella Bash

Danny Gokey & more at Bella Bash- for Regie Hamm\'s cause from Nashville Country Club on Vimeo.


 Click this link to find out more about the Bella Bash!

The following is taken from the website:

Founder: REGIE Hamm

In 2003, Yolanda and I flew to China and adopted our first child. Her name is Isabella Xin Meng Hamm and she is our heartbeat. We didn’t know it when we adopted her, but Isabella has a rare genetic disorder known as Angelman Syndrome. That means she is missing a tiny piece of her 15th maternal chromosome. Isabella can’t speak, bathe herself or respond to most verbal commands. She needs 24-hour monitoring to be able to function.

In the last three years, since we received Bella’s diagnosis, we’ve met some amazing people doing amazing things in the world of special needs therapy. This year we’ve formed the “Angel Wings Foundation.” This foundation will be dedicated to providing therapies and support to the most profoundly challenged of those with mental disabilities. Our long-term goal is to ultimately have an “Angel Center” here in middle Tennessee, which would be a comprehensive therapy and diagnosis center for all of those who are battling the most confusing disabilities, from Autism to Angelman Syndrome. We’re partnering with The Vanderbilt Kennedy Center to make that dream a reality.

For the past three years we’ve held something called the “Bella Bash” here in Nashville, a night of music and laughter that not only raises much needed funds but also awareness of Angelman Syndrome and all the other rare disorders that are in the shadows, (often being misdiagnosed as Autism). We want the Bella Bash to be a celebration of joy and hope and a great night out for some tired families who need to know they’re not alone in their struggle. The night will feature world class music as well as great comedy. When you leave the Bella Bash we want you to feel refreshed, renewed and ready to take on the rest of the year. Proceeds from the Bash go directly to the Angel Wings Foundation and that helps people like Louie Bichell, Rachel Pillow, Elizabeth Hathaway, Isabella Xin Meng Hamm and countless others learn how to communicate and expand their horizons far beyond anything they or we’ve ever dreamed!

We invite everyone to come out, have some fun, eat some food, listen to a great jam session, laugh, connect, enjoy and ultimately contribute your time to a great cause.

- Regie

My little cute kid winning, cover model! ;-)

Joshua is in the Connections "The Special Needs Kids Directory" Fall edition!!!! There is a great story about him and Angelman Syndrome on page 16!!!!

He is on the cover, and there is a FANTASTIC picture of he and his big sissy, Caylee, on page 18 with the article! 

Thanks Connections!

Water boy...

Love this picture! It never ceases to amaze me how much JOY Joshua gets, from just a splash of water! I could watch him play in it all day, every day.

Emma Eberhart: A story of acceptance and sportsmanship

Hipperbibs: Where Drool Is COOL!

My friend Susan, created the Hipperbib (click to visit site).

The creation of the Hipper Bib was designed for my son Ian.

Ian is 5 years old and is diagnosed with Angelman Syndrome which causes Ian to drool.  After searching for special needs bibs, drool bibs, and fashionable bibs, I decided to come up with a unique bib that had all of these features. I wanted a bib that would compliment his clothing and in turn would not draw attention to the fact that he was wearing a bib therefore, maintaining his since of dignity. 

Here is a slideshow that Susan created, with all of her BEAUTIFUL Hipperbib models!

Colin Farrell To Give Celebrity Support To Charity Gala

Colin Farrell To Give Celebrity Support To Charity Gala

The Pretty Simple World of Angelman

Pre-Order the 2011 Calendar of Angels!

The 2011 Calendar of Angels!!!

"Containing over 220 beautiful, smiling faces and inspirational messages, the 2011 ASF Calendar of Angels is the perfect holiday gift to inspire, delight and spread awareness about Angelman Syndrome. Expected shipping date is mid-November. The cost of each calendar is $10 plus shipping and handling. All proceeds benefit the Angelman Syndrome Foundation.

The ASF wishes to extend our gratitude to all of our Angelman families for sharing and contributing your beautiful photos and messages that are included in the 2011 Calendar of Angels. We also extend a huge thank you to John Heinzmann, father to Andrew (AS+), for his passion and devotion for all of his time and hard work in designing the calendar and coordinating the printing and logistics of the 2011 Calendar of Angels. Thank you all for making the 2011 Calendar of Angels a tremendous success!"

~Quote from the ASF

Hear What I Am Doing

HEAR WHAT I AM DOING


Please, mom,
hear what I am doing;
see what I am saying.
The world is a crazy, confusing, scary place for me.
I can’t do the things other kids do—my body doesn’t work right.

But inside, I’m just like other kids—I need to be loved and appreciated;

I need to belong, to fit in;

I need to contribute, to be useful;

I need to be heard and understood;

I desperately want you to be proud of me.

I want to tell you my needs, my feelings, my thoughts, but they get

trapped inside me because I can't get my mouth to say the words

There gets so much piled up inside me
that sometimes it just blows up everywhere
And I know you're disappointed in me
and you get angry at me
And somehow its all my fault.
My actions speak so loudly, you can’t see what I am saying.
Yet, my actions are my saying.
My body says what my mouth can't.
I act out my feelings,
but often the acting out is such a problem that my feelings go unnoticed.
But I have no other way of telling you my feelings.

I want to cooperate, to succeed, to contribute, to feel good about
myself, but to do that I must be heard.

Please, mom, hear what I am doing;

see what I am saying.

Author: Carolyn Hunsinger
Reprinted by permissionof the author

The Gift of Words

The Gift of Words: by Ursula Cranmer, AS mom
"This was made as a film-making project together with Diversity Peer Support Network."