Rett Girl Magazine Holiday 2018 V2

Holiday
2018

The Holidays

A Perspective of Thankfulness

DO IT YOURSELF

Holiday Slime with Page Sets

2018 Holiday

Gift Guide

RETT U

Susan's Favorite
Books as Gifts

THE EVERYTHING RETT SITE

RETT GIRL MAGAZINE HOLIDAY 2018 © COPYRIGHT 2018 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

This holiday season, let us focus on all that we are gratefu l
for - the strength we have found to overcome challenges, and
the joy and laughter for the days to come. Our community is
resi lient and courageous, somethi ng to truly be treasured. Joi n us
this season i n celebrati ng all of those who have paved the way
before us, and those who conti nue to move forward i n this journey!

The holidays are upon us yet again, and I cannot help but Can you believe it is already time for the holidays? Every
get excited about all of the possibilities that this season year, the holidays seem to sneak up on us. As special needs
brings-new adventures, meeting new people, making new parents, there is so much to navigate but also so much to
memories. This season is also the time when we really take celebrate. Finding balance during the holidays can be
a moment to look back on all we have to be thankful for, all tough.
we have accomplished, all we have overcome.
The holidays may be beautiful one day, but disastrous the
Ever since our daughter Evelyn was diagnosed with Rett next, or, if your holidays are like ours, they may switch from
Syndrome, at age three, our holiday season has looked beautiful to disastrous within moments.
PTHSD @ AHS CHƤDQDMS SG@M GNKHC@XR O@RS
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(MRSD@C NE VNQQX
BNMRHCDQ D@BG NBB@RHNM SGQNTFG SGD KDMR NE $UHD
6HKK RGD about the worst thing that can happen, I’ve decided to look
get overwhelmed? Is there a place for her to rest when for the most beautiful of moments. Those moments where
MDDCDC "@M RGD BNMƥCDMSKX M@UHF@SD SGD DMUHQNMLDMSR Magnolia’s cousins sing Jingle Bells for hours because that
VD @QD AQHMFHMF GDQ HMSN 6HKK SGDQD AD LHMCETK ODNOKD is what makes her happy. Those moments where looking at
VGDQD VD @QD FNHMF HM B@RD VD RGNTKC ƥMC NTQRDKUDR HM @ houses adorned in twinkle lights become a magical world.
situation where we need help with Evie’s two younger Those moments when our family is together and just being
brothers, Ellis and Merrit? All of these things are taken into together is enough. I’m going to relish in those moments.
consideration to help make sure that our family, as a whole,
is able to still maintain a sense of peace amidst the This holiday issue was created with the thought that we are
obstacles that Rett Syndrome brings. @KK SQXHMF SN CN NTQ ADRS
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There may be many challenges, but there are also many be a blend of magic and meltdowns, unconditional love
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6D BGDQHRG DUDQX LNLDMS ENQ and uncomfortable situations, holiday music and anxiety,
SGDX @QD ƦDDSHMF ATS RN AD@TSHETK
3GHR SHLD NE XD@Q VD S@JD twinkle lights and sensory overload. But so is our life.
the time to slow down and focus in, re-group, and start
looking ahead to the future. Our hopes for next year are So this year, I look forward to the magic, the memories and
DMCKDRR @MC VD RSDO ENQV@QC BNMƥCDMSKX HMSN D@BG @MC the chaos that the holiday season brings. May we all get
every one of them. through the holidays with love, a little bit of sweat and
maybe some happy tears.
Wishing you all of the happiness this holiday season
@9K LG GÌ=J I wish y’all, the happiest of holidays.
Jenny Tesler
Family Advocacy and Support Team
[email protected]

Carolyn Fowler
Family Advocacy and Support Team
[email protected]

HOLIDAY 2018 3

holiday

Magazine

“May your days be merry and bright”

Six Fabulous Categories in this
issue of the RettGirl Magazine!

5 hOLIDAY Activities DIY Slime with Tobii page pre-sets
11 Seasonal Recipes
17 Products Annie Smith’s favorite recipes
21 EDUCATION for the holidays
25 Health and Wellness
27 Girl Power 2 Cure Our gift guide is back!

Susan Norwell’s holiday book
recommendations!

Therapist tips for the holiday break!

Be inspired and get involved!

4 HOLIDAY 2018

Rett

GIRL

hOLIDAY
Activities

WE ARE ALL LIKE A SNOWFLAKE, ALL DIFFERENT IN OUR OWN BEAUTIFUL WAY

HOLIDAY 2018 5

Try Something New!

DIY Holiday Slime

Do something fun with your Rett girl or boy

Dashing through the snow, sliming all the way. Glitter and bells and things, what fun it is to slime and sing
a slimy song today. Slimy smell, slimy smells, sliming all the way. Oh what fun it is to sing a sliming song today!

Slime supplies: %KTƤX 2KHLD 2PTHRGX @MC RSQDSBGX ITRS KHJD SGD GNKHC@XR RGNTKC ADʖ
• Bowl, spoon, measuring cups and
spoons. Make sure to wash up after • Foam Shaving Cream - 3 cups
making the slime. Also, this goes • Food coloring - amount is up to you
without saying, but I’m saying it. • Baking Soda - ¼ teaspoon
This isn’t edible. Always use caution • PVA School Glue ½ cup
with kids. • Saline Solution - 1 tablespoon generic brand from Target-Up

Pro slime tips: and Up brand works well
• If you are going to be making a lot • Look for sodium borate and boric acid (needs to have these
of slime, buy glue by the gallon.
Washable school glue white or ingredients to create slime)
clear work well. • Put shaving cream in bowl, then add food coloring, the baking

6 HOLIDAY 2018 soda, glue, then saline solution (which is the slime activator).
Stir well after each ingredient is added in. Make sure to
incorporate all of the mixture while stirring. Stir, stir, stir... then
JMD@C SGD RKHLD
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knead. Keep squishing, kneading, pulling, and squishing. There
XNT FN ƦTƤX GNKHC@X RKHLDʖ
• How to store slime: Start in a big container, but over time it will
change consistency, get smaller but it is still fun to play with!

Slimy slime recipe: • ½ cup of Water
Fun additions:
• ½ cup Elmer’s Clear or white glue • Glitter
• 1 tablespoon Saline Solution (must • Confetti
• Food coloring
contains boric acid and sodium
borate)
• ¼ - ½ teaspoon Baking Soda

Add all the ingredients into a bowl and stir. Stir faster. Stir even
faster to activate the slime. Colors vary with opaqueness of glue.
Have fun with it. Add sparkles, add confetti. Make your holidays
sparkle with a fun sensory activity.

Holiday Fun Page Sets

To access instructions and Communicator page set for this activity,
go to RettUniversity.org Library> Resources> Free Resources

Happy New Year from Rett University! Don’t forget to download
the New Year’s page set from Rettuniversity.org.

We’d love to hear about your and your kiddo’s resolutions!

HOLIDAY 2018 7

“I love you!”
“Girl power!”

“Let’s go!”

Say it with your eyes using the Tobii Dynavox I-Series+

The Tobii Dynavox I-Series+ with built-in eye-tracking technology has been specifically designed for individuals with Rett
syndrome, Cerebral Palsy, ALS, and Stroke/Aphasia, who rely on augmentative and alternative communication to make
their voices heard. Discover the power of the I-Series+ with:

• A modern design and integrated eye tracker • Flexible pagesets that allow communication to grow
• Built-in cameras to catch all the special moments • Batteries that last and last
• Access to social media sites to keep connected • And so much more!
• Text messaging to say HI to family and friends

To learn more, contact your local Tobii Dynavox sales consultant and visit tobiidynavox.com.

Power to be You

8 HOLIDAY 2018

H a p py H o l i d ays

The Holiday Perspective

So much to be grateful for this season

At this time of the year, many people are becoming her/him understanding what was said, and every
more introspective. Where does one start? With so lean or grasp HR @M @L@YHMF ED@S SG@S VD @R O@QDMSŗR
many facets to our crazy lives, it is hard to put the will truly treasure.
brakes on and remember why we do what we do,
why we have what we have, and how our lives have This virtual world we all embrace has made many of
been shaped into what they are now. our lives so much stronger. We have connections to
new families that we would have never had otherwise.
Is it the cool and crispness in the air that brings The virtual world is a wonderful place to keep in touch
people closer? Is it the thought of sending someone VHSG SGD 1DSS BNLLTMHSX EQHDMCR E@LHKX @MC @ OK@BD
a special gift? Or is it just a time when celebrating a to share thoughts and ideas, accomplishments and
holiday-a-month becomes so important, we get disappointments.
reminded of what is truly important to us.
Necessity is the power of invention (as mom says)...
%NQ TR QDƦDBSHMF NM @KK SGD SGHMFR VD G@UD well these complex children need to be able to
accomplished during the year takes precedent. The communicate, and technology has enabled this to
new “normal” for us was something new and happen. Devices to enable “speech”, organizing
CHƧBTKS SN FDS TRDC SN
1D@KHYHMF SGDQD V@RMŗS FNHMF thoughts and being able to convey them - this is all
SN AD SG@S ƥQRS QNKK NUDQ RHS SN BQ@VK FQ@A NE E@UNQHSD a tremendous wall that science has helped to break
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was gut-wrenching. At every milestone, there had to an entirely new system of communicating your
be a change of thinking. How will this go for Laura? feelings, wants, desires, interests, and basic needs.
How will she be able to do it? Or not do it…again, a How would you handle such an obstacle?
change of thinking because there WAS something
AQHFGS @MC AD@TSHETK @ANTS SG@S ƥQRS FQ@A @MC GNKC NE The Holiday... this is a time to place our focus on
SGD ENQJ SG@S ƥQRS KD@M SN @BJMNVKDCFD XNTQ what our kids can do, not what they cannot. Maybe
OQDRDMBD SG@S ƥQRS KNNJ SNV@QCR XNT VGDM XNT awareness will become natural, and the “look” from
called her name. THAT was the new normal, and it is other people (when you tell them your daughter
amazing! With our new family, Girl Power 2 Cure, CNDRMŗS ROD@J CTD SN 1DSS VHKK MNS QDRTKS HM SGD
there has always been a continued hope that CQNNOX řNG (ŗL RNQQXŚ DWOQDRRHNM
"@M VD S@JD SGHR
something big will happen that will turn life around. holiday time to focus on creating an environment of
There is comradery that has surpassed any before. compassion; not only now, but throughout the full
6D ENBTR NM @KK NE KHEDŗR KHSSKD @BBNLOKHRGLDMSR @MC calendar year? Ask questions, talk to parents, talk
are grateful to have those little things occur when we to young adults and children about disabilities.
are able to see them happen. Every smile is such 3GHMFR @QD ITRS CHƤDQDMS NQ CNMD HM @ CHƤDQDMS V@X

a treasure, every quick look of acknowledgement is

HOLIDAY 2018 9

6GDM ( CVDKK NM @KK SGHMFR 1DSS KHJD CTQHMF .BSNADQ We mostly enjoy relaxing, spending time with each
Awareness Month, I remind myself what is positive in other, and just plain being silly. As Laura gives a “sense
NTQ KHUDR ( G@UD @ GNLD @ B@Q @ INA @MC @ E@LHKX VHSG of peace” to others, she also sends us a reminder to
an incredibly compassionate husband who will do slow down, be patient, and enjoy life as it is.
KHSDQ@KKX @MXSGHMF SN řƥWŚ VG@S GD B@M
( G@UD @
wonderfully healthy girl who works so hard every The Holidays…
hour of every day. Laura is the most patient person I Remember to Listen with Eyes wide open because you
JMNV CD@KHMF VHSG L@MX CHƤDQDMS ODNOKD VGN @QD
unable to understand what she is “cooing” or don’t want to miss the most excited “yes!” there is.
řTSSDQHMFŚ @MC RGD ITRS FNDR VHSG SGD ƦNV
“Peace”

The Waltons

For the holidays, let us all slow down and concentrate
on current traditions or building new ones. The
6@KSNMŗR VHKK L@JD NTQ QDHMCDDQ ENNC @MC ROQD@C HS
out on Christmas eve. We will decorate our tree and
try to add more lights to our house this year (we
found out how much Laura loves colorful light
displays... something she never really paid much
@SSDMSHNM SN D@QKX NM
6D VHKK ƥMC RNLD RODBH@K
holiday socks for her to wear, visit and share a meal
with a favorite family (where Laura is the guest of
honor, of course), and try to have a meal that she will
LOVE. Eating is her favorite thing to do! So, if there is
anyone who likes to share favorite recipes for those
on a vegan/FOMAP diet, we would love to share as well.

Tina and Dave Walton have been married for 21
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VGN HR XD@QR NKC
+@TQ@ V@R CH@FMNRDC VHSG 1DSS
Syndrome on March 14, 2007. Tina and Dave
support GP2C by holding annual Rockin' for Rett
events, attending as many events as time allows,
@SSDMCHMF SGD #HRMDX /QHMBDRR 1@BD 6DDJDMC @MC
promoting GP2C where ever they go. Tina and Dave
are both musicians, performing in and around the
Tucson area. They both teach music in local public
and private schools. Laura attends the same
schools and enjoys having mom and dad as her
music teachers.

10 HOLIDAY 2018

Rett

GIRL

hOLIDAY
Recipes

THE HOLIDAYS ARE ABOUT COMING TOGETHER, SHARING A TABLE,
TRYING NEW RECIPES AND MAKING FUN MEMORIES

HOLIDAY 2018 11



F o o d N e t w o r k S ta r

#HANGRYHOUSeWIFE ANNIE SMITH

Professional Chef and Rett mom to Mikyla

I love Bundt cakes. They are easy-peasy and a slam dunk when it comes to oven baking. This Maple Spiced
Apple Cake is one of my favorite holiday desserts. It's a showstopper recipe that always turns out moist
and delicious. I made a few changes by adding some rosemary and orange zest, and a splash of Bourbon
to the icing (because it’s the holidays people). You can also divide this cake in half, adjust the time, bake
in two loaf pans and freeze. Take them out of the freezer before company pops by, whip up some fresh

frosting, and you will look like a supa star. Enjoy!

MAPLE SPICED CAKE WITH ORANGE ROSEMARY FROSTING
ADAPTED FROM GIADA DE LAURENTIS

Cake Ingredients

CAKE DIRECTIONS • 3 medium Granny Smith apples, peeled,
cored, and diced into 1/4 in pieces
1. Preheat oven to 350 degrees F.
2. Flour and grease 10 inch tubed pan. • 1 1/2 cups maple syrup
3. In a large bowl, mix together maple syrup, eggs, sugar, oil and vanilla. • 3 eggs at room temperature

(M @ RDO@Q@SD ANVK VGHRJ SNFDSGDQ ƦNTQ A@JHMF ONVCDQ A@JHMF RNC@ • 3/4 cup light brown sugar
• 3/4 cup avocado oil
cinnamon, nutmeg, ginger, and salt. • 1 tablespoon vanilla extract
5. Mix dry ingredients with wet ingredients, taking care not to overmix. Ş BTOR / ƦNTQ
6. Mix in apples and pecans. • 1 1/2 teaspoons baking powder
7. Pour into prepared pan and bake until skewer comes out clean about • 1 1/2 teaspoons baking soda
• 1 tablespoon ground cinnamon
55 minutes. • 1/2 teaspoon ground nutmeg
8. Cool in pan for 15 minutes, then invert onto a rack to cool completely. • 1/2 teaspoon ground ginger
Ş SD@RONNM ƥMD R@KS
ICING DIRECTIONS • 1 cup chopped pecans


(M @ ENNC OQNBDRRNQ BNLAHMD ƥQRS HMFQDCHDMSR TMSHK BNLAHMDC
ICING Ingredients
2. Add water to desired pourable consistency.
3. Spoon icing over cake and allow to set 30 minutes before slicing • 1 cup powdered sugar
• 1/4 cup heavy cream
(if you can wait that long!) • 4 ounces cream cheese at room temperature
Ş SD@RONNM ƥMDKX BGNOODC EQDRG QNRDL@QX
• 1 teaspoon grated orange zest
• 1/4-1/3 cup water
• 2 teaspoons vanilla extract
*Splash of bourbon optional

HOLIDAY 2018 13

These smoky spiced nuts are To. Die. For. I like to make a huge batch of candied nuts every year as hostess
gifts. They are also delicious on ice cream, pumpkin pie, or apple pie... pretty much anything that could

ADMDƥS EQNL @ R@KSX RVDDS R@UNQX BQTMBG
8NT VHKK CDƥMHSDKX V@MS SN GHCD @ I@Q ENQ XNTQRDKE


SUGAR AND SPICE CANDIED NUTS - ADAPTED FROM SMITTEN KITCHEN

Ingredients
Ş BTO C@QJ AQNVM RTF@Q
Ş BTO VGHSD FQ@MTK@SDC RTF@Q
• 2 teaspoons kosher salt
Ş SD@RONNM RLNJDC O@OQHJ@
• 1 teaspoon ground cinnamon
• Pinch fresh ground black pepper
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Ş DFF VGHSD QNNL SDLODQ@STQD

(cold eggs are easier to separate...
sigh... such is life)
Ş S@AKDRONNM V@SDQ

SPICED NUTS DIRECTIONS

/QDGD@S NUDM SN CDFQDDR

2. Mix sugars, salt, cayenne, and cinnamon, making sure there are no lumps; set aside.

!D@S DFF VGHSD @MC V@SDQ TMSHK EQNSGX ATS MNS RSHƤ

4. Add nut and stir to coat evently.

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!@JD ENQ LHMTSDR RSHQQHMF SVHBD

8. Remove from oven and separate nuts as they cool.

6GDM BNLOKDSDKX BNNK ONTQ SGD MTSR HMSN @ ANVK AQD@JHMF TO @MX SG@S RSHBJ SNFDSGDQ


14 HOLIDAY 2018

I always get excited and a little giddy when I see cranberries at the market. To me, it’s the kickstart of my
favorite holiday. This cranberry salsa is an easy appetizer that can be enjoyed with chips, slathered on top

of brie, cream cheese, or leftover turkey tacos. Yum!

CRANBERRY SALSA

Ingredients

• 1 red bell pepper
• 1 fresh poblano chili
• 1/2 cup sugar
• 1/4 cup fresh orange juice
• 2 cups cranberries
• 2 tablespoons orange zest
• 1/2 chopped fresh cilantro
• 1 diced jalapeno optional

CRANBERRY SALSA DIRECTIONS


"G@Q QDC ADKK ODOODQ @MC EQDRG ONAK@MN NUDQ F@R Ʀ@LD NQ AQNHKDQ TMSHK AK@BJDMDC NM @KK RHCDR

2. Place peppers in a bowl and cover with plastic wrap and let steam for 10 minutes.
3. Peel, seed, and chop peppers.
4. Pulse cranberries in food processor.
5. Stir in orange zest and chopped cilantro.
6. Allow to macerate for 15 minutes for sugar to dissolve.
7. Season with salt and pepper.
Can be made 1 day ahead. Cover and refrigerate

Don’t forget! For those with a blended diet all your
holiday recipes can be adapted to suit your Rett girl or
boys needs-so they will essentially be able to eat the

same nutritious foods you serve your whole family.

HOLIDAY 2018 15



Rett

GIRL

hOLIDAY

Products

THE BEST GIFTS ARE THE ONES YOU GIVE

HOLIDAY 2018 17

O u r fav o r i t e H o l i d ay P r o d u c t s

GifT Guide

RettGirl’s 10th Annual list of recommended gifts

1Avengers/Star Wars Crew Socks*The items with a (*) next to them
can easily be found in our GP2C
Gearing up for winter time? What better wayshop! Just follow the link

2SN NTSƥS XNTQ 1DSS ANX SG@M VHSG UDMFDQR @MC s h o p. g i r l p o w e r 2 c u r e . o r g

Star Wars themed socks. WebRiderz Outdoor Swing N’ Spin
3Disney Princess Fairytale Songs*
Hang this web swing from your tallest tree. Can seat
Enjoy all of your favorite Disney Princess songs withmultiple people and hold up to 600 lbs. Multiple places
for child to grip or easy enough to enjoy laying down.
this wonderful compilation of all the classics from Fun to be had for days to come!

4our favorite Disney Princesses! Boxer Interactive, AI Robot Toy
Lukasa Bluetooth Beanie Hat, Unisex (Blue), with remote control
-
65Knit Wireless Cap with Built-in Stereo Fun and interactive AI robot with a lot of personality.
Can be remote controlled, or Boxer is equipped to
Speakers & Mic Headphone Beanie follow you and respond to your movements.

This stylish beanie has built-in wireless headphones Disney Princess Girls’ Long
perfect for when you are out and about on cold Sleeve Nightgown*
days-provides the ability to play calming music via
!KTDSNNSG VHSGNTS R@BQHƥBHMF V@QLSG NQ BNLENQS
Your little princess can cozy up this holiday
season wearing a nightgown featuring all of the
latest Disney Princesses.

18 HOLIDAY 2018

7Marvel Little Boy’s Spiderman Jellycat Bashful Dinosaur, Small, 7 in*

2-Piece, Fleece Pajama Set* This Bashful Dinosaur would make a great addition for
our little animal lovers, providing comfort and security
8NTQ 1DSS ANX B@M MNV ƥFGS BQHLD VGHKD GD wherever they go.
RKDDOR
3GHR SVN OHDBD ƦDDBD O@I@L@ RDS VHKK
keep our adventurers warm all night long Think Fun What’s Gnu Game

180 9VGHKD ƥFGSHMF BQHLD
The ultimate three-letter learning game! Teaches
word recognition, vocabulary building, and reading

skills.
11
Tisy Wonderful Quiet -
Romantic Starlight

Light up your boy or girls’ room with this
mesmerizing light display. This lamp will
light up the room with the night’s sky,
without disrupting sleep!

12 Lite Brite

Xbox Adaptive Controller A great activity to do with your Rett girl or boy. Endless
possibilities with design and color combinations. Let
Designed to meet the needs of gamers with your girl or boy lead the way.
limited mobility, the Xbox Adaptive Controller
HR @ TMHƥDC GTA SG@S GDKOR L@JD F@LHMF LNQD
accessible.

HOLIDAY 2018 19

Helping Others Recover the Power to Move

To learn more, go to www.neurologicalrecoverycenter.com

20 HOLIDAY 2018

Rett

GIRL

hOLIDAY
Education

TAKE EVERY OPPORTUNITY TO LEARN SOMETHING NEW

HOLIDAY 2018 21

Ta k e t h e t i m e t o r e a d t h i s H o l i d ay

Susan’s Holiday Booklist

All is merry and all is bright

A LETTER FROM SUSAN NORWELL M.A.
Dear all and Happy Holidays!
( GD@Q EQNL @ KNS NE O@QDMSR @ANTS SGD BG@KKDMFD NE ƥMCHMF FNNC FHESR ENQ SGDHQ JHCCNR @S SGD GNKHC@X SHLD
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JMNV LD @S @KK XNT JMNV ( VHKK QDBNLLDMC ANNJR
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.TQ JHCCNR @QD RN FNNC @S DXD ONHMSHMF SG@S SGDX
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/KTR QD@CHMF DWO@MCR SGHMJHMF
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8NT VHKK
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LNCDKDC NM SGD O@FD RDS SG@S HR CNVMKN@C@AKD EQNL SG@S R@LD KHMJDC O@FD
$MINX @MC G@UD @ FQD@S 'NKHC@Xʖ

WE DON’T EAT OUR CLASSMATES
BY RYAN T. HIGGINS
https://rettuniversity.org/rett-u-book-club-10/
/DMDKNOD HR ITRS RS@QSHMF RBGNNK @MC HR @ AHS RTQOQHRDC
SG@S @KK GDQ BK@RRL@SDR @QD BGHKCQDM CDKHBHNTR BGHKCQDM
@S SG@Sʖ 3GHR RSNQX HR ETMMX RVDDS @MC @ AHS RB@QX ENQ
/DMDKNODŗR BK@RRL@SDRʖ 3GHR HR @ ANNJ ( MDUDQ FDS SHQDC
NE QD@CHMF @KNTCʖ

STEPHANIE’S PONYTAIL
BY ROBERT MUNSCH
https://rettuniversity.org/rett-u-book-club-7/
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KNUD SGHR ANNJ @ANTS @ FHQK SG@S G@R GDQ NVM HCD@R @MC
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( SGHMJ SGHR ANNJ HR FQD@S ENQ
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DKRD
2SDOG@MHDŗR HMCHUHCT@KHSX @MC BQD@SHUHSX L@JD ENQ @
UDQX ETMMX DMCHMF


22 HOLIDAY 2018

THAT IS NOT A GOOD IDEA
BY MO WILLEMS
https://rettuniversity.org/rett-u-book-club/
( ITRS KNUD @MXSGHMF AX ,N 6HKKDLR QDLDLADQ #NMŗS
+DS SGD /HFDNM #QHUD SGD !TR 6DKK SGHR NMD HR DUDM
ETMMHDQ @R @ ENW SQHDR SN Ʀ@SSDQ @ FNNRD HMSN UHRHSHMF
GHR JHSBGDM
3GD FNRKHMFR RSD@K SGD RGNV HM SGHR ANNJ
@R SGDX RGNTS V@QMHMFR SGQNTFGNTSʖ !D OQDO@QDC ENQ
@ RTQOQHRD DMCHMF


WILFRID GORDAN MCDONALD PARTRIDGE
BY MEM FOX
https://rettuniversity.org/rett-u-book-club-2/
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HOLIDAY 2018 23

Rett Boy Spotlight

The Shukovsky Family and their son Grayson

Grateful for this Rare, but Beautiful Life.
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Evania Shukovsky

Grayson’s story, please consider donating:
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24 HOLIDAY 2018

Rett

GIRL

hOLIDAY

a h and Wellness

MAY YOUR DAYS BE FILLED WITH HAPPINESS AND HEALTH ALWAYS

HOLIDAY 2018 25

A time for excitement and fun

HolidayTips from aTherapist

Ways to be prepared

Therapeutic Suggestions for the Holidays 5. Create a safe place or “cool zone” (this is a “time-in”
positive intervention, not a “time-out”) to calm and
1. Physical activities should be incorporated in daily ground the body when your child is overwhelmed with
routines to provide the much-needed sensory input sensory information.
through movements and heavy work to help our children
feel grounded and more organized. Team with your child 6. If your child has tactile defensiveness, be sure to allow
to come up with some fun and purposeful sensory adequate personal space during group activities. When
breaks, such as going for a walk, playing in the snow, physical contact is necessary, such as holding her hands or
wheelbarrow and animal walking, wiggling time/dancing, body, approach her from the front, provide advance
pushing in some chairs, handing out water bottles, or V@QMHMFR @MC TRD @ ƥQL FQHO
+HFGS @MC TMDWODBSDC SNTBG
cleaning the table. Many research studies have shown is unpleasant and can be over stimulating.
that heavy work or physical activities can help release
endorphins to calm the central nervous system. 7. Always think “energy conservation”. Ask yourself, “what
can I do to support my child’s body and help her feel
2. Pre-teach about the holiday event and show some BNLENQS@AKDŚ RN SG@S RGD B@M EQDD RNLD DƤNQS SN DMINX
pictures of familiar people to decrease the anxiety of the being with family and friends.
unknown. Arrive to an event early. This will give your
child time to warm up to the environment instead of
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entering a room full of people, noises, moving bodies, awareness and understanding of the connection between
and activities. actions and inner feelings. Our children may feel belittled
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3. Teach your child to visually scan her environment to
increase awareness and understanding of her 9. Use a mirror to help with getting dressed, eating, and
surroundings. One can facilitate this skill by narrating the wiping the face to increase body awareness.
surroundings or playing “I see... I spy...”
10. Plan to build-in cool down time... quiet moments with
4. Use headphones or calming background music/white whispering and gentle movements during or after an
noise to help with noise cancellations. exciting, loud play activity. Speak slowly with a softer
voice. Whispering can be very regulating for our children.

Dr. Uyen Nguyen has practiced developmental pediatric

occupational therapy for over 18 years, foc•using on teaming

with parents, students, teachers, caregivers, and other

health professionals to understand the connection between •

sensorimotor challenges and self-regulation. She commits

to advocacy and respect for individual differences. Her

private practice is in Encino, CA. When she is not practicing

• OT, she enjoys cycling, yoga, scuba diving, traveling, and

spending quality time with family and friends.

26 HOLIDAY 2018

Rett

GIRL

hOLIDAY

GP2C

HOLIDAY HAPPENINGS

HOLIDAY 2018 27

GP2C CAMPAIGNS & EVENTS

HOST AN EVENT

Help Girl Power 2 Cure in their multi-fold mission to educate,
support families and fund the increasingly hopeful research
for a cure! Here are some ideas for events you can host in
your area while spreading awareness in your community:
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භ Run, walk or ride event
භ Dinner party or dine-around
භ Restaurant give-back nights
භ Retail give-back events
Or any idea you can come up with! We are ready to get
creative with you and assist you along the way! Contact Amei
at [email protected] to get started!

DISNEY PRINCESS

Come join us for the Disney Princess Half Marathon Race
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camaraderie and hope. We have Half Marathon and Fairy
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Please join us for this amazing weekend to support all the
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to: www.gp2c.org/princess

WANT TO HELP GIRL POWER 2 CURE FIGHT RETT SYNDROME?
HERE ARE 3 SIMPLE WAYS:

FACEBOOK FUNDRAISING

Have a birthday or special occasion coming up? Consider a Facebook Fundraiser campaign on behalf of Girl Power 2
Cure! Check out our quick video turtorial below – Easy as 1-2-3!

www.gp2c.org/fbfundraising

AMAZON SMILE

Shop and make Girl Power 2 Cure your charity of choice on AmazonSmile and continue to #RiseAboveRett with every
purchase you make.

www.gp2c.org/amazonsmile

EMPLOYEE MATCHING PROGRAMS

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donations and help support the mission of Girl Power 2 Cure.

28 HOLIDAY 2018

Why I Run Q&A

Hope in Action

Every runner has a story. I asked veteran Girl Power 2 Cure runner, Niki Tebbe (mom to Quinn), why she runs. Her story is layered, beautiful
and inspiring.

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I started running after completing nursing school in 1992. My boys. They are also great about keeping Quinn entertained (reading,
motivation was to be healthy and more active, but my greatest going for walks or having a snack together), and I appreciate their
motivation came when my Dad passed away. He was the strongest help. They are teenagers now, so it’s not “cool” to take care of your
person I knew; a hard worker, of average weight, and manual labor sister, but they see her happiness when they include her. She
was a part of his daily life. My Dad and I were very close. At age 39, absolutely adores them. As special needs parents, training for any
he passed away from cardiovascular disease and complications race is no small feat. Motivation is not our only struggle; many do
from heart surgery. It was a shock, and I was devastated. not understand this. They empathize, but will never completely
understand “what it takes”.
I began by walking and gradually transitioned to running. For
motivation, I registered for races. I knew they would push me. :KDW WLSV ZRXOG \RX JLYH VRPHRQH MXVW VWDUWLQJ RXW"
Suddenly 26 years later, I am still running… not as often as I would
like, but I still consider myself a runner. • Start slow and gradually ease into running
• Make a realistic schedule
:K\ GLG \RX ZDQW WR UXQ 'LVQH\ 3ULQFHVV" • Compromise and commitment are critical
• You will get stronger, and it will get easier
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Disney Princess is about Quinn. DP represents what I can do to help
her and all others with Rett Syndrome. The friendships that have For race day, you can run, walk, or run-walk-run and then sprint
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their every-day struggles. They run a race every minute of the day. %HMHRGHMF HR DWGHK@Q@SHMF DRODBH@KKX @ G@KE L@Q@SGNM
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Like our kids, I practice, I train, I work really hard, I am exhausted, but will take your breath away. You will likely cry happy tears of
I stay the course, and I don’t give up. It is a humbling experience, and accomplishment (some may ugly cry). When the medal is placed
I literally see, feel and experience how hard they work ALL the time. around your neck, you know you have accomplished your goal. Win
“your” race!
The joy that comes from DP is like no other. If you want to run a race,
the best place on earth is Disney. Running through the parks is pure :K\ GR \RX UXQ"
happiness, and you are just in awe as you move through the park!
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feel the support of spectators. The Princess Run attracts runners of stress, feel alive… but
all abilities, and like Rett Syndrome, it’s about hope, determination also for my daughter. I
and overcoming your limitations. run for hope, and for a
Rett Syndrome cure.
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sometimes I did), but discipline returns, and I stay focused.
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family, because I couldn’t do it without their support. Some of the
duties that are usually designated as Mom-jobs are shared by the

HOLIDAY 2018 29

November 2018

Dear families and friends,

I’m more optimistic than ever that the research we are spurring at the Rett Syndrome Research
Trust is leading to a profound reversal of this devastating disorder. My promise to you and to my
own daughter is that we will never rest until we have achieved that. Our strong, resilient, and
beautiful children deserve nothing less than our full-out attack on Rett, and that’s exactly what
we’re doing at RSRT.

Over the last year, major progress has been made. The most exciting news is that a human clinical
trial for Rett Syndrome in gene therapy is on track to launch early in 2019. The trial is being
developed by the biotech AveXis, a Novartis company, using data that was generated by RSRT’s
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genetic core and offers the potential of a cure.

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be room to improve. This is why our Gene Therapy Consortium is continuing full speed ahead and
is developing second-generation gene therapy programs. RSRT also continues to aggressively
and strategically pursue other approaches including MECP2 reactivation, RNA editing, and
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pursuing the right approaches to get results that will change our loved ones’ lives and our own
lives as parents, grandparents, siblings, and families.

All of these exciting approaches are part of RSRT’s 3-year, $33 million strategic research plan,
Roadmap to a Cure, which we launched in March of 2017. We’re now more than half way through
that 3-year time period and I’m pleased to say that, thanks to the efforts and generosity of so
many families, we’ve secured almost $20 million towards our $33 million goal. Much work lies
ahead, on both the research side to get the results we want, and to raise the funds we need to
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organization. We spend an average of 4% of funding on overhead expenses, so 96% goes directly
to research.

I look forward to keeping you closely apprised of our progress. Thank you to Girl Power 2 Cure
for supporting RSRT. Thank you to all who share our sense of urgency to cure this disorder and
set our children free from its grasp. Together I know we can do this.

Warmly,

Monica Coenraads | Executive Director

[email protected] 203-445-0041

The Power of Your Gift

It’s more than just hope!!!

Since joining GP2C in February, I stand amazed at the resolve and determination of every Rett Syndrome family I meet. You are
our inspiration. Our accomplishments for 2018 are noteworthy, ranging from a fantastic Disney Princess event in February,
over 100 Facebook birthday fundraisers and our Firecracker Fundraiser in July, Rockin’ for Rett events in both New Jersey and
Huntsville, and runs, rides, individual donations and other events too numerous to list.

But through these events and activities, there are two things that every family brings to our attention – excitement for the
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can be. This tells me that in some small way, we are doing the right thing. Our themes of More than just hope and keeping them
ready are on-point, and our multi-fold mission to fund research, support families, and educate via our Rett University
curriculum is the right thing… and VD @QD L@JHMF @ CHƤDQDMBDʖ

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You have all been so generous throughout the year, and we hope that you will help close out 2018 on the highest possible
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• Visit the Power of Your Gift website and encourage your friends and family to do the same
• Leverage your Social Media outreach – so many of you have loving and dedicated Facebook/social media networks –

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fundraiser templates on our GP2C Facebook O@FD VGHBG VHKK L@JD RDSTO @KLNRS HMRS@MS@MDNTRʖ
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for you. And as we look forward to 2019 and more exciting research
developments, Rett University NƤDQHMFR @MC B@QHMF E@LHKX RTOONQS UH@
RettGirl.org, we pray that your family, and especially our Rett girls and
boys, will thrive until the cure is with us. Today more than ever before, it
truly is more than just hope.

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merry holiday season.

Kevin
Development Director
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[email protected]

HOLIDAY 2018 31

GrowwitihngRHetotpSe foyrnFdraommiel!ies WWW.RETTGIRL.ORG/GUIDE

Hope in Action 2019!
What does your hope in action look like?

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Wawe acrreeanteess

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UNIVERSITY

RETT GIRL HOLIDAY MAGAZINE 2018 © COPYRIGHT 2018. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED