Hi guys!
June brings new schedules and a period of time to adapt to the new schedules. Busy kids means busy Mom. Trying to be "present" in this busy time is a challenge.
William is in "Shrek the Musical" - rehearsals, rehearsals and more rehearsals! This means a lot of driving and late nights (William has been getting to bed at midnight!) Opening night is June 14 with a total of 6 performances. Proud of him and happy that he has this experience. In saying that, I will be happy when the driving time dips when the musical sunsets.
Harry is going to a ballet intensive for a month. He leaves in 2 weeks. Since he has been out of school he still has ballet class and he still has a job. This means driving time. I am happy he is going to ballet camp and will miss him at home. He is very helpful. And funny. He always lightens the mood! And causes the mood! Happy the driving time will drop off when he leaves for camp.
Evelyn had big plans at the beginning of this month. She went on a mission trip to Peru living in a small village while helping the community in many ways. Evelyn helped build a house, taught English, harvested rice, visited families and helped with errands for the church. I am proud of her for going on this mission trip. I am also aware that her leaving has left a huge hole in making our schedules work. Especially with the driving.
Since my husband Jimmy's death, I have relied on Evelyn for helping me during this loss to our lives. She is my driver, errand runner, chef and caregiver for William.
Then she leaves me... (to help others, I know!)
How did I do it? I relied on being "present". I planned the "how" I was going to make this work and then let my mind stay in the experience where my body was attending. I became more attune to the task I was performing and the people around me.
I made adjustments to my schedule at work and attended to the family schedule as well. Without Evelyn. I can't believe I did it!
She had an amazing experience in Peru. Me and the boys had an amazing experience together at home.
We missed Evelyn! We are glad she is back home. William calls her the "nice" mom. I am ok with that. So is Evelyn.... Another adjustment that was necessary to our lives.
Enjoy the summer! Be present in your busy lives. It is worth it!
All best,
Ellyn
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Don't Forget to
Bring your Silent Auction Items!!!
All proceeds go to the Carol Richey Fund which assists first time attendees Montreal 2018 SSSA Conference is only a week away!!
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Click
here
to pay SSSA Yearly Dues
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If you haven't booked your hotel room for the conference next week click below!
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On Behalf of the SSSA
we wanted to say Thank you to everyone on this list for their generous donations to our organization!
In Memory of John Riley, Great Grandfather of Blain Lowry
The SSSA Thanks you so much for your generosity!
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DVD:
A Journey from Diagnosis through Life
created by the SSSA
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Make a tax deductible donation
to the SSSA TODAY!!
Mail to...
ATTN:
Treasurer - Monica Jacobs
375 W. Sunset Street
Gardner, KS 60030
THANK YOU
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Hope all of our Sotos Dad's had a wonderful Father's Day!!
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SOTOS SYNDROME SUPPORT ASSOCIATION NOTICE OF
ANNUAL GENERAL MEETING
Take Notice that the Annual General Meeting of the Members of Sotos Syndrome Support Association will be held at the Holiday Inn & Suites, Pointe Claire, Montreal Airport, Canada on Sunday, July 8, 2018 at 9:00 a.m. local time for the following purposes:
1. To receive the financial report of the Treasurer;
2. To receive the membership report;
3. To elect directors; and
4. To transact such other business as may properly come before the meeting or any adjournment thereof
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If you are unable to attend the meeting, you may appoint another person to cast your vote by completing, signing and returning the attached form of Proxy. You may appoint any person by inserting that person's name where indicated or you may appoint the President, Ellyn Novak Hefner, by checking the box next to her name.
DATED this day of May 10, 2018 by Order of the Board
Ellyn Novak Hefner, President
If you are interested in taking a position as a board member or officer or serving on a committee, please email
president@sotossydrome.org.
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What to Wear in Montreal in July
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What to Wear
Dress light. Very light. Stay away from Polyester! Instead, opt for natural, lightweight fabrics like linen, a comfort saver on a hot and humid festival day, and consider merino wool t-shirts and tanks, which minimize sweat patches by wicking away sweat quickly and effectively, this without damaging or discoloring the fabric. Seriously. It sounds counterintuitive to wear wool but merino wool is somewhat of a miracle fabric.
It warms you up in the winter and cools you down in the summer. The trick with merino is to wear the appropriate thickness, which for summer, translates into a thinner fabric that offers more heat relief than cotton.
What to Pack
- Shorts, linen pants, short-sleeved and sleeveless shirts, tank tops, summer dresses (particularly maxi dresses which are comfortable on a warm day and yet can withstand a temperature drop in the evening)
- Light cardigans (e.g., linen, merino wool), wraps, light cotton jackets, blazers, windbreakers
- Long pants, jeans, leggings made of breathable material
- Closed-toe shoes, open-toe shoes, sandals
- Sunglasses and sunscreen are a must year-round; sunhat could be useful
- Swim suits, if you plan on swimming at the Hotel Pool
- Umbrella and/or raincoat
- Light snacks for your hotel room
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What Kind of Weather Should I Expect In Montreal?!?
Montreal at the Beginning of July
Although mornings are often characterized by overcast weather, in general the climatic conditions improve over the hours so it is still possible to benefit from wonderful sunshine to brighten up the rest of the day. As the temperatures oscillate between 20° C and 28° C, the heat is rather pleasant all day.
Montreal in the Middle of July
In the second ten day period, the weather in Montreal throughout July continues to improve, thanks to the increase in heat certainly, however also because of the beautiful sun that is becoming more and more important. In fact, in spite of the sky which is covered from time to time, the clouds scatter rapidly.
The weather in July can vary!! (I always update my weather app on my smart phone to show me the weather in region I will be traveling to!) :)
Please make sure you have sunscreen, hats and glasses.
Read more at https://www.whereandwhen.net/when/north-america/quebec/montreal/july/#fHfkDYV9XM2JpDlY.99
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Looking for assistance editing the newsletter!!! Please email newsletter@sotossyndrome.org
if you are interested!!
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Here are some basic travel tips to keep in mind!!
DO NOT FORGET YOUR PASSPORT! ;-)
What to wear:
o Comfortable clothes to travel in, shoes that are easy to get on and off. (When going through security at the airport you will be asked to remove your shoes.)
o You will want to wear shoes and clothing that are comfortable, most conferences last all day so you will want to be as comfortable as possible.
o Bring a light sweater or jacket! (The conference rooms tend to be chilly)
Something great about the SSSA conference which is not typical with other conferences is the doctor visit. Having an opportunity to speak with and listen to the doctors is truly a fantastic part of the SSSA conference.
Here are tips for that opportunity at the conference:
- bring your child's care notebook which might include: test results, genetic test results, CT/MRI scans, IEP (the doctors may not need all of this info)
- start compiling a list of questions you may have....they are there to answer questions and will not physically examine your child.
- Having every thing prepared will make the most of your visit during the limited time you have with doctors
- Most of all, you will meet one of the great doctors with great care for our kids!
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Enjoy this wonderful Opportunity!!
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No Bake Summer Berry Icebox Cake
Prep time
4 hours 15 mins
Total time
4 hours 15 mins
Looking for a quick and easy Summer dessert recipe? Try our delicious No Bake Summer Berry Icebox Cake !
Author:
CakesCottage
Recipe type:
Dessert
Serves:
12-16
Ingredients
- 19 oz graham crackers
- 8 oz cream cheese, softened
- 2 (3.4 oz) packages Vanilla Instant Pudding
- 2-1/2 cups cold milk
- 12 oz Cool whip (or homemade whipped cream)
- 3 cups fresh strawberries, sliced
- 1-1/2 cups fresh blueberries
- 2 oz white chocolate chips
Instructions
- Beat cream cheese and dry pudding mixes in large bowl with mixer until blended.
- Gradually beat in milk.
- Gently stir in Cool Whip or homemade whipped cream, reserving ½ cup.
- Spread a thin layer of cool whip in a 9x13 pan just to coat the bottom.
- Layer 5 graham crackers across the center of the pan, then 2 more, breaking them as needed to fit around the top and bottom edges.
- Spread a layer of pudding mixture over grahams and top with a layer of blueberries and sliced strawberries.
- Place graham crackers on top of berries, then pudding mixture, then layer of berries again.
- Repeat the graham-pudding-berries layers 1 more time (3 times total) and you should reach the top of the pan.
- Refrigerate for at least 4 hours or overnight until the graham crackers have softened completely.
- When ready to serve, melt white chocolate chips in a bowl as directed on package and drizzle over dessert.
- You can use a spoon to drizzle it over the tops of the berries or you can put it into a small zip-top bag and snip of the corner for an easy "piping bag."
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Montreal, Canada -
SSSA Conference June 2018
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Looking for something to see closer to your hotel? Built in 1710, the Pointe-Claire Windmill is the oldest on the island of Montreal and one of the oldest in North America.
SSSA 2018 Conference - Montreal, Canada
Friday, July 06, 2018 - Sunday, July 08
, 2018
Holiday Inn & Suites Pointe Claire.
Pointe Claire, Quebec, Canada
H9R 1C2
$139 - $159 +tax CAD
To and from Pierre Elliott Trudeau (YUL) airport,
there is a shuttle from 5am to 12h30am with seats upon availability
We're looking for volunteers for the Montreal conference. If you have some spare time, & you'd like to help, please contact us at :
info@sssac.com
, use the subject line "2018 conference".
The SSSA looks forward to seeing everyone in Montreal. Don't forget to make your hotel reservation.
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Montreal, Canada -
SSSA Conference 2018
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For passport, visa, eTA information :
Don't Forget!!! You must have a VALID Passport to travel to Montreal!
Closest American airport:
US Airport near Montreal 109km / 68 miles
Platsburgh International Airport (PBG)
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