In this Issue: 

President's Message
2021 Parent University™ 8th Class: "Transition Programs & Schools: What Is The Right
     Choice?" on 8/19/2021!
July Is Fragile X (FXS) Awareness Month!
Costa Mesa fourth-grader petitions school district for greater accessibility to restrooms
This is Where We Will Be...

President's Message:
                                            
Dear Clients and Friends,

It's mid-July and I just can't imagine how we got to the middle of summer already.  Parents are already focusing on school!  Our next Parent University™ class will be focusing on educational programs.  In our class last week, we had a wonderful time sharing stories with 8 adult siblings, hearing their stories and their advice.  If you haven't watched it, take some time to do so!
 
We have been very busy here at Protected Tomorrows.  We are designing some new programs, adding new people and capabilities, and planning some fun events.  We look forward to sharing all of it with you in the next issues.  This issue is full of some amazing stories of persons who are making a difference.  I hope you enjoy it.
 
Enjoy the rest of your summer, as we will too!
 
Warmest regards,


Mary Anne Ehlert,
Founder & President


We are excited to announce our eighth 2021 Parent University webinar class, "Transition Programs & Schools: What Is The Right Choice?", to be held on Thursday, August 19th, 2021 from 7:00pm - 8:00pm CST.    

Registration is required.  Please click here to register.




Class description: Finding the transition program that best meets the needs of your child with a disability is so important.  We will discuss the different types of programs, what type of program is best for your child, what types of community-based programs are out there, what programs will benefit your child, and how can you fund the programs your child attends.             

PLEASE NOTE: If you are not able to attend this class live but you would like to watch the recorded video at a later time, please make sure to register for this class.  All registrants will receive the information needed to watch the recorded video the day after this class, on Friday, August 20th, 2021 

July is Fragile X (FXS) Awareness Month! 

This year marks the 21st year of celebrating Fragile X Awareness in the U.S. since Congress designated July 22 as National Fragile X Awareness Day.  Over the years, the reach of awareness messages has grown exponentially as the community has expanded and parent groups around the world joined in their own efforts to raise awareness of Fragile X.


Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics.  Though FXS occurs in both genders, males are more frequently affected than females, and generally with greater severity.

Help Raise Awareness for Fragile X by joining X Strides!  X Strides is a fun, family-friendly (virtual) run/walk to raise awareness and funds to support the mission of the National Fragile X Foundation.
July is International Fragile X Awareness Month, so what better time to Walk, Bike, Run, Scooter, or Stride for Fragile X!  Get together with your family and friends, create an in-person or virtual team, and join them to have fun and help raise awareness and funds for Fragile X from anywhere in the world!  For more information, please visit X Strides.

Five Facts about Fragile X:

  *  The gene responsible for Fragile X is called FMR1 and is found on the X chromosome.  Everyone
         has the FMR1 gene on their X chromosome.
  *  The FMR1 gene makes a protein (FMRP) that is important in brain development. Individuals with
         Fragile X syndrome have a deficiency of this protein.
  *  Fragile X conditions are inherited genetically, passed through generations often unknowingly.
  *  Females who are premutation carriers of the Fragile X gene mutation have a 50/50 chance of
         passing the gene mutation to each of their children.
  *  Males who are premutation carriers of the Fragile X gene will pass the gene to all of their
         daughters (giving them his X chromosome) but none of his sons (his Y chromosome).

Here are a few resources from the National Fragile X Foundation:



Another resource worth noting is the Fragile X News Today newsletter.  Click this link to view the latest newsletter and to subscribe.

Costa Mesa fourth-grader petitions school district for greater accessibility to restrooms
by Lilly Nguyen| Daily Pilot | Los Angeles Times

Rory Siwula is 9 years old and speaks quickly, as if she were in a rush to get all the words out.

She's confident and happy to answer questions about herself. She's entering the fourth grade this fall. She uses a wheelchair. She is in the special education program at Killybrooke Elementary. She thinks of herself as pretty smart and said she knows generally what people think about when they see her.

And she's tired of hearing "no" from the Newport-Mesa Unified School District, which she and her family allege does not provide enough accessibility to restrooms at her Costa Mesa campus.

Rory said that she can't reach the lights, sink or soap dispensers, and that there are no stalls that fit her wheelchair in the general education restrooms. While there are special education restrooms around campus, Rory said they're sometimes occupied, which means she can't always use them when she needs to.

Other times, she finds herself forced to wait for a restroom monitor to escort her to the restroom or for someone to unlock an unoccupied one - a fact that Rory takes issue with as someone who is fiercely independent, according to her mother, Kelly Siwula.

"I don't want kids to have anxiety issues, because I've experienced it and it's not great," said Rory, who has a condition called caudal regression syndrome, also known as sacral agenesis, which means that parts of her lower spine are absent.  Click here to read more.


require hands on assistance from others for about 60% of his waking hours. Since his early teens, Lou has faced off against much older students in mathematic competitions and math camps around the
world.

His prowess with numbers and near-perfect SAT score have earned him spots next fall at three of the nation's most selective universities - Harvard, Caltech and his first choice of M.I.T., where he'll start online classes in the fall.

Lou said his college dream is to study math, physics and biology with the goal of one day designing assistance products for people with disabilities like himself to become more self-sufficient.  He's still not sure how that will all come together, but he's eager to find out.

"You have to sample a lot of different things and get out in the world," he said. "You don't always win. You often fail.  But you'll look back after many years and realize you will be successful."  Click here to read more.

This is Where We Will Be...





 

Aug 6        Sponsored by: Angelman Syndrome
                  Online Zoom Webinar

                   Schools - What Is The Right Choice?
                   Online Zoom Class

                   Online Zoom Class

Sept 30     Trusts vs. ABLE
                   Sponsored by: The Arc of the Quad Cities Area
                   Online Zoom Webinar

Oct 14       Guardianship vs. POA
                   Sponsored by: The Arc of the Quad Cities Area
                   Rock Island, IL

                   For Your Family
                    Online Zoom Class

Nov 4        How To Plan For The Future
                   Sponsored by: The Arc of the Quad Cities Area
                   Rock Island, IL

Nov 6         Sponsored by: NAMI Wisconsin
                    Pewaukee, WI

                   Review
                    Online Zoom Class

For more information on these click here!
 
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