January Newsletter

CASANA’s goals for 2018, social media updates, and more


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Supporting Our Community in 2018:

A Letter from Our Executive Director    

Dear Friends:

Let me begin by wishing each of you a Happy New Year. This is the time of year that allows us to imagine what the year can hold for our organization, and in turn, for you. It is the time to think about what we can create this year for parents of children with apraxia, for speech-language pathologists, for our volunteers and for our research communities. It is the time to dream
big about what we can do for our apraxia stars in 2018.

In 2018, our team is focused on growing what we do best and supporting those who help us do it. Last Walk season, members from the CASANA staff were able to attend over 30 Walk for Apraxia events in order to talk in-depth with volunteers and participants on the ground. Our Walk for Apraxia program is an incredibly successful effort that has grown to inspire thousands
of families across the United States and Canada since 2008. We have thousands of Walkers and dedicated volunteers that participate every year to raise funds and awareness for children with apraxia. The feedback we received from attending these 30 + events is that we must further grow our support networks to match the force of our volunteers. While these amazing volunteers that lead Walk events felt supported by CASANA, we must change our approach to ensure
that the events are sustainable long-term in these communities. In 2018, we will be tackling this challenge head-on. As an outgrowth of the conversations we had with volunteers and Walk Coordinators last Walk season, we will be piloting new models of support in 15-17 Walk communities. We will focus on building volunteer committees working together to grow these Walk events to become stronger and more sustainable than ever before.

Our program and education arm will also be pushing ahead this year to be bigger, better, and stronger. In 2018, we will be able to offer tailored, customized live webinar experiences for large groups. We have already done this successfully with pilot groups and aim to bring this unique education experience to our professionals and/or parents to learn together. Additionally,
we have now expanded our Professional Advisory Council to 24 members. Our Programs team will turn to these experts for input, guidance, review and support through the year.   Finally, we
will be identifying ways to provide localized outreach to better support our families and help them utilize local resources.

This, and so much more, is in store for 2018. We can’t wait to see what the year will bring. Thank you for being by our side every step of the way.

Many thanks for your support,

 

Angela Grimm

Executive Director

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2018 Walk Details Coming Soon!

Every year, our Walk communities show us the meaning of coming together to support the apraxia stars in our lives. Our 2017 Walk for Apraxia season was an amazing success, drawing over 14,000 people from cities across America and Canada.

Soon, we will be gearing up for another exciting season. Stay tuned in the next few weeks for new information regarding events, logos, T-Shirts, and more! In the meantime, make sure you’ve “liked” the Walk for Apraxia Facebook page so you can stay up to date on Walk news.

 

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BOOTCAMP

Bootcamp Deadline Approaches

The Boot Camp deadline is coming up! The Childhood Apraxia of Speech Intensive Training Institute (Apraxia Boot Camp) was designed as a means by which our organization could strategically identify and intensively train qualified and interested speech-language pathologists in order to boost their clinical expertise in the diagnosis and treatment of CAS. It is intended to provide experienced professionals an opportunity to become “master” clinicians who can then serve as local/regional experts and potential mentors for other clinicians. Sound like you? Go to our application page to read more about how to apply! The deadline to apply is January 31st, 2018.

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Winter Sale!

CASANA is having a WINTER SALE! The temperatures have dropped, and so have our prices! Shop sales up to 50% off on some of our most popular items. Once these items are gone, they are GONE! Don’t delay – shop today! Prices on our store website are already discounted to reflect the price changes.

And before you pack up your decorations, remember that our limited edition 2017 ornament is over 40% off, and the next 10 purchases will also receive a surprise free ornament! This sale will continue while supplies last – so buy yours today!

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New Free Webinar Every Month!

Social media is a great tool and can be used in many different ways to create many different outcomes. Each month the staff at CASANA will review some of the more popular Facebook posts among our Facebook groups and, in response, offer a webinar from the On-Demand Library, free of charge in order to advance the discussion.

 

This Month:

 

What Do Genes Have to Do with Apraxia?

This month you are invited to view the webinar featuring Beate Peter, PhD, CCC-SLP, entitled “Genetic Causes of Childhood Apraxia of Speech Case Based Introduction to DNA, Inheritance, and Clinical Management” free of charge until January 31, 2018. Beate Peter, Ph.D., CCC-SLP, is Assistant Professor of Speech and Hearing Science at Arizona State University. Her graduate training and clinical practice focused on speech-language pathology, whereas her postdoctoral training was completed in medical and statistical genetics. With this interdisciplinary background, Dr. Peter investigates the genetic etiologies of communication disorders. How do genes influence the brain, muscles, and the disorders that we observe and treat as clinicians? Using a broad set of tools including behavioral testing, brain imaging, and DNA analysis, Dr. Peter wants to find answers to this question. In the future, a better understanding of genetic causes will allow us to identify very young children at risk for communication disorders and motivate creating interventions that can be used at earlier ages than we currently imagine. Recently, Dr. Peter established the BCL11A gene as a candidate gene for childhood apraxia of speech, based on a case with a deletion involving this gene. Problems involving this gene are rare among children with communication disorders; surprisingly little is known about the causal genes in this field. Making inroads into this field is the mission of the Peter Speech/Language Genetics Lab.

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“Genetic Causes of Childhood Apraxia of Speech Case Based Introduction to DNA, Inheritance, and Clinical Management” provides a case-based introduction to the
world of genetics with a special emphasis on childhood apraxia of speech (CAS). Using the examples of individuals and families with CAS, basic concepts of genetics are illustrated, including chromosomes, genes, mutations,
deletions/duplications, and modes of inheritance. Knowledge of genetics has many practical implications, for instance early identification of infants at risk, watching for early signs of the disorder, and developing early interventions.

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Valentine's Day

 

 

Spread the Love

Looking ahead to February? Interested in ordering Valentines Day cards? There’s plenty of time!  When you use our Picaboo link to order your cards, 50% of your proceeds go to CASANA, and you can use the code CARDS4CAUSES to get 50% OFF your order! 

If you’re looking for a small awareness item to send your child to school with on Valentine’s Day, look no further! We have our Apraxia window cling sets on sale, bundled 10 for $15 dollars. These awareness items were $5 each before; get them while supplies last!

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Volunteer at the National Conference

Volunteers are CASANA’s most valued resource! We are now accepting applications for volunteers for our 2018 National Conference on Childhood Apraxia of Speech. The Conference will be held in Charlotte, NC on July 12- 14.

Volunteers are chosen based on the knowledge, skills and abilities that are necessary to mount an event of this size and nature. Selected volunteers may register for a deeply discounted price and are encouraged to attend Conference sessions. To view the application or learn more about volunteering, please visit our website. The deadline to apply is March 1st, 2018. Applicants will be notified of their application status by March 15th.

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Supporting Families on Social Media

A Note From Our Vice President of Programs, David Hammer

Dear Friends:

Facebook remains a critical resource for our families as they navigate their journey making connections, finding resources and seeking support.  As many of you are aware, Sharon Gretz is no longer with CASANA as of December 31st, 2017.  Her  timely, thoughtful, substantive and supportive responses to posts in CASANA’s social media groups were well received and vital to the success of our Facebook groups.

CASANA’s staff and board of director’s  remain committed to social media as a valuable way toCASANA Facebook Profile provide support to families and SLPs. Kara Bayer, our new Social Media Coordinator along with myself,  as the certified SLP on staff at CASANA, have enlisted a select group of professional advisory council members as our response “team.”  Our goal is to respond in a manner that takes into careful consideration all available information, prior relevant discussions on topics, and best expert advice.  That will involve securing input from members on the advisory council along with a “bank” of selected responses. Rest assured that CASANA will make every effort to personalize responses.  We understand the need for participants on social media to feel that personal touch, and we will strive to make that happen.

If you haven’t taken a moment to join our general Facebook group or haven’t yet found a group specific to your region or interests, I suggest you visit our website to see all of the groups we have available.

I welcome any feedback you might have as we continue this journey with CAS together.

Dave Hammer

CASANA VP of Programs

davidh@apraxia-kids.org

Happy Graduation:

An Apraxia Success Story

Fifteen years ago, Alayna was diagnosed with apraxia at age two and a half. Her mother
Donna was lost. “Would she ever be able to talk?” Donna wondered. “Would she be able to go to a public school? Do regular things with her peers?” Unsure of the future, Donna found and

joined one of CASANA’s first programs: an online community where parents could give Alayna Graduates High Schooladvice, share stories, and support each other through the journey of raising a child with apraxia. During her time in this group, Donna found a community full of other parents ready to cheer her on through navigating therapy and IEPs. Because of the information Donna found from other parents through CASANA, Alayna was able to get the help that she needed.

This year, all of Donna and Alayna’s hard work paid off: Alayna graduated from high school and is planning to go to college. “If I had any advice to give to parents with children who have Apraxia,” Donna says, “it would be to stick with a group like this and learn all that you can.” Our current Facebook parent support group has more than 20,000 members who support each other daily and help parents like Donna learn what they need to fight for their children. By supporting CASANA, you are helping us build these networks of support so that children like Alayna can thrive.

Read Alayna and Donna’s whole story on our website.

 

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After launching our updated Newsletter format, we want to hear from you! Please take a minute to let us know what you think of the new format, and help us decide how we can improve.

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IMPORTANT DATES
  
1.31.2018

 

Application Due for the Intensive Training Institute

Do you have what it takes to be a Boot Camper?

3.01.2018

 

Deadline to Apply to Be National Conference Volunteer

The 2018 National Conference on Childhood Apraxia of Speech will be on July 12-14, 2018 at the Sheraton Charlotte Hotel in Charlotte, NC.

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