I was surprised the other night as I drove down the road to see so many people outside busily setting up their Christmas decorations.  A part of me was sad at this sight.  Every year Christmas commercialism sneaks up a little earlier…. the hustle and bustle of it all.  Sometimes it is easier just to get through the holidays as quickly as possible yet I find after a difficult year personally, it is important for me to share my thoughts for Thanksgiving.   Outside of the big feast, the rest of the holiday seems lost.

I have so many things to be grateful for.

I have a comfortable home in which I live.  I have all the amenities;  heat, electricity, television for entertainment, computers to work and play on, house full of furniture, adequate clothing to wear.  So many people around the world are happy to have a place to lay their head and they don’t mind not having the “amenities”.

I have 3 adorable children.  My oldest is elegant, funny, intelligent, trustworthy, honest, loving, and an amazing giver of herself and her time.  My son is smart, a comedian works hard and plays harder.  He has autism but he refuses to let it have him.  My sweet youngest daughter.  She is my teacher.  She suffers from Rett Syndrome, a very debilitating genetic disorder.  Imagine the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy and anxiety disorders all in one little girl.  She does not know life outside the confines her body restricts her to yet she is the happiest most delightful child.  Her eyes are bright and happy and her snuggles can melt away all the pain of my worst days.

I am grateful for amazing doctors.  We had an opportunity to see specialists for the first time for my youngest and my understanding and awareness has grown tremendously.  Thank you for all the late nights, difficult research, and awe inspiring love you have for disabled children.

I am grateful for having a companion to loves me.  I may not be the best at showing my appreciation, love, and respect for him, but I would be lost without him in my life.

I am grateful for teachers.  Some changes were made this year with my son and he bravely went to a new school this year.  This teacher has made all the difference.  My son will repeatedly say he hates the teacher but he knows that the firm structured classroom is exactly what he needs.  My daughter goes to an inclusive preschool where she is surrounded by an entire school of people that have a great love for our special children.  I know how much I worry about my children; I can hardly imagine how much love went in to these ladies (and gents) decision to come and love and worry about an entire school of some of the choicest spirits.  I applaud you!

I am grateful for the opportunity to serve others.  My physical health has been difficult the past 2 years and I have felt a great loss in my life.  I no longer am the one most can turn to in a pinch to babysit their children, to cook meals for the ill. Yet small opportunities arise where I am able to serve.  I have been able to help network to help when someone needs to find a deal on medical supplies.  I have been able to help fundraise for charities.  It may not seem like much, but I am to help serve others in my own way and am grateful I can recognize that.

I am grateful to be the recipient of service and charity.   Without generous people donating items for a yard sale, we would not have had the money to see the specialists that opened our eyes to so many more things that my daughter is able to do.  I am grateful to friends and neighbors who come to help me care for my children when I am too ill to get out of bed, for bringing cookies knowing I don’t have the time to bake them, for stopping by just to let me know I am thought of.

I am grateful for inspiration.  I found myself in a little boutique this spring and as always, I had to check the sale and clearance items.  It was on this day I came across an idea that started my home based business.  I have enjoyed many conversations with friends about ways I can help them with their children by adapting clothing at an affordable price.  It may not be profitable as of yet, but I know I am doing the right thing and am seeing through this company.

As you can see, I have much to be thankful for and I wanted to express to everyone the joy I have in my life when I take the time to reflect and be thankful.  May your families be blessed this Thanksgiving and throughout the next year.  And know, I am always a listening ear, a great networker, a good friend… know

I hope to be a part of your lives for many years to come.  Happy Thanksgiving!

Syndi K.  is the owner of Spatzgear, an adaptive clothing company for disabled people.

Syndi K is the owner of Spatzgear, the lowest priced adaptive clothing company on the internet!

Syndi K is the owner of Spatzgear, the lowest priced adaptive clothing company on the internet!

John Hollinghurst

John Hollinghurst of KSL news in Salt Lake City (NBC affliate locally) will be interviewing Dr Alan Rope of the University of Utah tomorrow for a news piece.  I do not know if there will be any families featured or not but we are happy for the exposure.  Not sure if this will be airing tomorrow or not but as soon as I have information I will share.  We may be getting a plug for Oprah in this also.

Syndi K. is the founder of spatzgear.com a site dedicated to making adaptive clothing at an affordable price.

I am sending a message from Dr Tony Horton, IRSF CSO, about this exciting study.  We will share more info as the researchers get organized and begin enrollment!

Regarding the proposed trial using IGF1:

IGF1 is a medication that is currently used to treat growth problems in children but it has not been used to treat developmental problems or symptoms of Rett syndrome.

Early work in animals suggests that targeting the IGF1 signaling pathway may partially improve symptoms in a single mouse model of Rett syndrome but we have no data to recommend its use to treat people with Rett syndrome.

We do not know if IGF1 will be at all effective in children with Rett and it could have potentially serious side effects. It should therefore not be used in children with Rett outside an approved research clinical  trial by doctors familiar with the drug and how to monitor the complications that can arise.

IRSF will provide funding to support a such a study at Children’s Hospital Boston.  The pilot clinical study using IGF1 will be carried out in a carefully controlled setting.  The investigators are in the process of seeking instititutional review board approval to carry out the study but they are not currently recruiting patients and do not yet have a start date for the trial.

Currently the best available treatment for Rett syndrome is routine medical care and management of symptoms, preferably under the supervision of a physician familiar with the condition.

If you are interested in hearing more about the IGF1 study as it evolves please contact Children’s Hospital Boston for further details and we will provide further information when we are able.

Rob Graham (Public Affairs Mgt)

Department of Public Affairs
Children’s Hospital Boston
617-919-3111
Rob.Graham@childrens.harvard.edu

www.childrenshospital.org/vector
www.childrenshospital.org/newsroom

Syndi K. is the founder of spatzgear.com a site dedicated to making adaptive clothing at an affordable price.

The whole story can be viewed at http://www.eurekalert.org/pub_releases/2009-09/irsf-iaf092109.php

Syndi K. is the founder of spatzgear.com a site dedicated to making adaptive clothing at an affordable price.

Syndi K. is the founder of spatzgear.com a site dedicated to making adaptive clothing at an affordable price.

The shopping cart seems to be down and I will be working on it tomorrow.  If you are interested in purchasing any items, please email me through the contacts page for now.  I will let everyone know when it is back up and running.

My new friend, Lauryn

So sorry for my absense.  I have so much to tell everybody!  I want to introduce everyone to my new friend Lauryn.  She lives in Idaho with her family and also has Rett Syndrome.  I have been a “facebook friend” with her mother for awhile now but recently got to know her mother, Kalli.  What an awesome lady!  With all my hype and energy to get letters for Oprah and my fundraiser yard sale (details to come on that), she claims I inspired her.  Me?  Seriously?  But awesome!

Kalli is very quickly pulling her own fundraiser together her own fundraiser, Write and Raffle for Rett Syndrome.  The event will be held on October 17, 2009 at Hillcrest High School in Idaho Falls.

Supplies to write letters will be available that night. In exchange for letters, each participant will receive a raffle ticket to win great prizes.  The whole family can come…every letter gets a ticket!   Tickets will also be sold for $2 each.  Winners will be drawn that night.  Monetary proceeds from ticket sales will go towards research or event printing costs.  Letters will be gathered and shipped to a Rett Syndrome representative and then hand delivered to Harpo Productions.

Raffle prizes include: a big screen TV, X-Box, I-Pod, men’s watch, Wii, and much more.  The list is growing everyday!

I will be driving to Idaho to be a part of this great fundraiser and am so excited to be able to support another great fundraiser!

Syndi K. is the founder of spatzgear.com a site dedicated to making adaptive clothing at an affordable price.

You can also help by going to my website, www.spatzgear.com and ordering your special bibs, pajamas, wheelchair capes… and keep looking…. plenty more to come.

I also have Kylee Clark Photography offering a photo package for $65 and a good portion of that will go to our fund.   Click on her name to see some of her work.