Schizencephaly Awareness bracelets

mixed metals, Swarovski Crystal, all bracelets include our purple and green awareness ribbon charm $35. Breciated purple and green precious stone, bright purple and green awareness bracelet.
These are a limited time only
donation

All designs available

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Purple crystal

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Green crystal

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Bright purple and green

Bright purple and green

 


Color


Chicago fundraiser success

 

Congratulations to a wonderful fundraiser in Chicago!!!

 And thank you to Kelly Churchill for working with RARE!

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Schizencephaly Awareness Day Request Letters

So everyone understands the legality of making an awareness day official.

  1. We have to be consistent and show that we have done this for a multiple amount of years. ( This being our third) It has to be documented ( which we have online and via newspapers)
  2. The letters have to go through your state senate and congress ( we have forms for every state for anyone wanting to send them out below)

Only then will the awareness day be recognized as it goes through congress. State officials ( governors mayors etc ) do not have the power to make a day official. that is why we keep telling you families to get our forms and send them to your actual lawmakers.

It is imperative.

Official forms addressed to each senator and congressperson in every state are provided below. It is the ONLY legal way to make a day of awareness happen.  Just trying to clear up some confusion so you all understand a governor has no authority to make anything legal or official.

It literally takes an “Act of Congress”

If we want to see positive change we have to follow the legalities involved in making this happen. Find your state from the list below, download and send to each of your state senators.

Continue reading

Schizencephaly and Sports

Just the contribute to the amazing accomplishments of our children who have rare brian disorders is their ability to participate in sports.

Sports can be an instrumental tool in helping your child socially in addition to promoting mobility and healthy exercise. Similar to the different therapies (i.e. physical, speech, occupational, and stress), the stretches, muscle repetition and flexibility techniques can all improve range of motion. Given cerebral palsy is common with children who have Schizencephaly and many other brain disorders, it is critical to do any activity that encourages the use of normally dormant muscles.

Therapy can become very taxing on a child. He or she often associates it with work. This is another benefit of getting involved in a sport, is the implication of implementing a positive activity that your child can have fun doing. Even an individual who is not physically challenged has more interest in doing something when they enjoy it versus seeing it as work.

So what sports are recommended? Well that depends on the interests and abilities of your child.

Here are some activities that our children participate in…
Gymnastics – flexibility and muscle strengthening
Baseball – coordination and range of motion
Dance – muscle retention and coordination

Our schizencephaly parents, what sports or activity is your child involved in?

North Carolina Professionals

avatar-profile-pictureName: Dr. Daniel E. Couture, M.D.

Specialty: Assistant Professor, Neurosurgery

Affiliated Hospitals: Wake Forest Baptist Health

Websitehttp://www.wakehealth.edu/

Recommended By: Montana Hayes

 

 

avatar-profile-pictureName: Dr. Adele K. Evans, M.D.

Specialty: Associate Professor, Pediatric Otolaryngology

Affiliated Hospitals: Wake Forest Baptist Health

Websitehttp://www.wakehealth.edu/

Recommended By: Montana Hayes

 

 

Ohio Professionals

avatar-profile-pictureName: Dr. Thomas G Andreshak, MD, FAAOS

Specialty: Sports Medicine Specialist, Surgical Specialist, Orthopaedic Surgeon

Affiliated Hospitals: St. Vincent Mercy Medical Center

Websitehttp://www.mercyweb.org/

Recommended By: Stephanie Ziemann

 

 

avatar-profile-pictureName: Dr. Ateeq Haseeb, MD

Specialty: Pediatrics and Clinical Neurophysiology

Affiliated Hospitals: St. Vincent Mercy Medical Center

Websitehttp://www.mercyweb.org/

Recommended By: Stephanie Ziemann

 

 

avatar-profile-pictureName: Dr. Robert W. Mills, MD

Specialty: Pediatrics

Affiliated Hospitals: St. Vincent Mercy Medical Center

Websitehttp://www.mercyweb.org/

Recommended By: Stephanie Ziemann

 

 

avatar-profile-pictureName: Dr. Julie T. Miller, DO

Specialty: Pediatric Physical Medicine/
Rehabilitation

Affiliated Hospitals: ProMedica

Websitehttp://www.promedica.org/

Recommended By: Stephanie Ziemann

 

 

avatar-profile-pictureName: Dr. Bob Rhee, MD

Specialty: Pediatric Ophthalmologist

Affiliated Hospitals: Pediatric Ophthalmology Consultants, LLC

Websitehttp://www.pocllc.com/

Recommended By: Stephanie Ziemann

 

 

Fundraising Efforts

We are sponsoring two fundraising efforts with It’s All About Life to help a family in need. Please support us with this by purchasing any of the following t-shirts and/or iPhone cases.

Schizencephaly Awareness - iPhone Case Covers

Order a “Touched by an Angel” iPhone by following the link below! Order form is on the right-side of the It’s About Life webpage.

Click Here to View

Schizencephaly Rocks My WORLD! Tshirt

Order a “Schizencephaly Rocks My WORLD!” shirt today by following the link below!

Click Here to View

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