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January news & updates

In this Issue:

President's Message

Announcing the 1st Class of 2022 Parent University: "Just Starting to Navigate the World of Special Needs? We Have You Covered! Plus, The Year Ahead"

January 24th Is Moebius Syndrome Awareness Day!

January is National Blood Donor Month!

Google's New Project Relate App Aims To Help People With Speech Impairments Communicate

Firm Designs Buildings To Meet Needs of Kids With Autism

This is Where We Will Be...

President's Message

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Happy New Years, Clients, Friends and Associates!


Here we are all together in 2022.  I look back at 2021, and I just can’t believe how fast and how slow it went. That is a strange thing to say I know, but there were days I thought the year would never be over, but I looked back, and time us flew by as there were so many worrisome distractions.


Those who know me know that I am a life long learner. I'm always trying to identify ways to do things better, to reach more families, and to bring more ideas and solutions to you. We received wonderful feedback on our Protected Tomorrows Parent University program, as well great ideas and insights for our upcoming year. There were so many ideas, we are still sifting through them, so the whole curriculum for 2022 is not finalized. We will have our first class on January 27th, and this class will be a refresher for the prior participants, and A Catch Up on the basics for New Participants.  As always, all classes are recorded.


Another exciting project is our Content Library, that we will be making to Not For Profits. We are excited about this program and will have the details to announce in February.


I wish you all an outstanding, safe and healthy 2022. See you online and maybe even in person!!!


Warmest regards,


Mary Anne Ehlert

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Announcing the 1st Class of 2022 Parent University: "Just Starting to Navigate the World of Special Needs? We Have You Covered! Plus, The Year Ahead" on January 27, 2022!

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We are excited to announce our first 2022 Parent University™ webinar class, "Just Starting to Navigate the World of Special Needs? We Have You Covered! Plus, The Year Ahead", to be held on Thursday, January 27th, 2022 from 7:00pm - 8:00pm CDT.   

 

Registration is required.  Please click here to register.

 

Class description: In this class, we will provide an overview of each class that we will be presenting in 2022. Don’t worry, if you are just a beginner and don’t know where to start, we will cover the top three things you need to know, to include setting up your Special Needs Trust, setting up your Dream Team, and making sure your child is getting all the benefits to which they are entitled.       

 

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, January 28, 2022.  

  

We look forward to you joining us!

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January 24th is Moebius Syndrome Awareness Day!

Courtesy of The Moebius Syndrome Foundation

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Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24th — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888.


In 2011, Moebius Syndrome Awareness Day was started by the Many Faces of Moebius Syndrome

and has been embraced globally by other organizations that support efforts to raise awareness. The Moebius Syndrome Foundation celebrates #MSAD by sharing information about Moebius syndrome, offering financial support and resources to approved events, encouraging people to wear purple, and raising awareness through various means and channels.


Moebius syndrome is a rare congenital (present at birth) developmental disorder, characterized by absence or underdevelopment of the nerves that control facial (cranial nerve 7) and eye movements (cranial nerve 6).


Most people with Moebius syndrome have weakness or complete paralysis of the facial muscles. Children and adults with facial paralysis may be unable to smile, frown, raise their eyebrows, close their eyelids or pucker their lips. This not only results in lack of facial expression but may also result in drooling and difficulty with speech. Infants can have difficulty with sucking and swallowing.


Other features of Moebius syndrome can include:

  • Motor delays due to upper body weakness
  • Strabismus (crossed eyes)
  • Dry eyes and irritability
  • Dental problems
  • High palate
  • Cleft palate
  • Hand and feet problems including club foot and missing or fused fingers (syndactyly)
  • Hearing problems
  • Poland’s syndrome (chest wall and upper limb anomalies)


The incidence of Moebius syndrome is roughly 2 to 20 cases per million births. The condition occurs in all ethnicities. There is no gender bias (males and females are affected equally). At present, the etiology of Moebius syndrome is currently poorly understood, but may be due to genetic and/or environmental factors.


In very rare cases, a change in specific genes may be causative of Moebius syndrome. Additionally, there are several other separate conditions with similarities to Moebius syndrome that have identified genetic etiologies.


The Moebius Syndrome Foundation provides information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. Click here for more information, resources, and support for Moebius Syndrome.

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January is National Blood Donor Month!

Information courtesy of National Today

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According to the American Red Cross, winter is “one of the most difficult times of year to collect enough blood products to meet patient needs.” That’s because of, among other things, busy holiday schedules and bad weather often resulting in canceled blood drives. Furthermore, seasonal illnesses such as the flu force potential donors to forgo their blood donations.


That’s just one of the reasons that National Blood Donor Month, which has taken place each January since 1970, is such an important observance. Donating blood saves many lives and improves health for many people. According to the World Health Organization, “blood is the most precious gift that anyone can give to another person — the gift of life. A decision to donate your blood can save a life, or even several if your blood is separated into its components — red cells, platelets and plasma.”


5 Amazing Facts About Blood Donations:


  1. Not enough blood for all of us. According to the American Red Cross, about 38 percent of the U.S. population can donate blood — but only 10 percent actually do.
  2. Fill 'er up with regular — donations. Brookhaven National Laboratory says that people who begin donating blood at age 17 and donate every eight weeks will have donated 48 gallons of blood by age 76.
  3. Donate blood and get medical info. When we donate blood, labs examine the donation for multiple infectious diseases, such as HIV and West Nile virus.
  4. Dogs can donate, too! Your dog can donate blood, too. Check with your veterinarian and the Humane Society to make sure you know the local rules and regulations for this type of donation.
  5. The multiplier effect is huge. Every time we donate one pint of blood, the potential is there to save three lives.


National Blood Donor Month is important because donating saves lives. Someone needs blood every few seconds in the United States. And more than 4.5 million Americans would die every year without lifesaving blood transfusions. National Blood Donor Month helps us remember these vital statistics. Donating is the gift that keeps on giving. The American Red Cross needs 13,000 blood donations every single day to maintain an appropriate blood supply. Fortunately, eligible blood donors can donate blood every eight weeks. And finally, donating is good for donors, too. The American Journal of Epidemiology reports that blood donors are 88 percent less likely to have a heart attack.


To observe National Blood Donor Month, make a donation not just in honor of National Blood Donor Month, but in the simple spirit of providing the stuff of life to those who need it most. Donate now. Donate again in eight weeks. Repeat. Inspire people to donate. And those donations can in turn inspire others to donate, creating an exponential increase in blood donations when and where they're needed the most. And learn and remember your blood type: O positive donors are needed more often than other blood types. O negative donors are considered "universal donors." AB positive donors are "universal recipients."

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Google's New Project Relate App Aims To Help People With Speech Impairments Communicate

by Abrar Al-Heeti | c|net

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The company is looking for people to test the app and provide feedback.


Google is developing and testing an app designed to help people with speech impairments more easily communicate with others. Project Relate, an app for Android, is now inviting an "initial group of people" to test the product, the company said in a blog post Tuesday. The app is also designed to help facilitate interactions with the Google Assistant.


"[We] realized that our speech recognition technology could be improved to help people with speech impairments be better understood," Julie Cattiau, product manager in Google Research, said during an Inventors @ Google virtual event Tuesday. "Standard speech recognition doesn't always work as well for people with atypical speech because the algorithms have not been trained on samples of their speech."


So Google decided to make an app that would be "custom-trained on individuals' unique speech patterns," Cattiau said. To start, users record a set of phrases so the app can get to know how they talk. Then, Google uses speech data to personalize the technology and help users carry out commands. Click here to read more.

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Firm Designs Buildings To Meet Needs Of Kids With Autism

by Bob Shaw | St. Paul Pioneer Press/TNS

Steve Orfield thinks a building design tailored to kids with autism might be good for everyone. His business, Orfield Laboratories, based in Minneapolis, designs buildings to provide a sense of calm for anyone on the autism spectrum. Through years of consulting, he has found that the simplified design has the same effect on anyone in schools, clinics and offices.


“I want spaces to be perceptually quiet,” Orfield said. By that, he means spaces that do not excite the senses, but calm them — all of them.


He showcased his ideas in Woodbury, at the Fraser Clinic for children with autism. From the parking lot to the treatment rooms, his building smooths over potential sensory rough spots.


“This is the model we strive for,” said A.J. Paron, mother of a 26-year-old son with autism and longtime client of Fraser. “We can do an environment that doesn’t add to the chaos.”


Orfield Laboratories researches how consumer products make people feel. Orfield calls it “the first multi-sensory design and research company in the world.” Click here to read more.

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This Is Where We Will Be...

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Upcoming Speeches/Conferences/Events for 2022:  

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January 27:


2022 Parent University Class 1: Just Starting to Navigate the World of Special Needs? We Have You Covered! Plus The Year Ahead

Online Zoom Class


March 4:


Finance, SSI, Medicare & Medicaid Webinar

Sponsored by: SEDOL

Online Zoom Webinar




For more information on these events, click here!

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