A Perspective of Thankfulness
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 tru ly 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.
quite a bit diﬀerent than holidays past. We no longer are as
“go with the ﬂow” as we once were. We now have to We never know what may come our way. Instead of worry
consider each occasion through the lens of Evie. Will she 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
needed? Can she conﬁdently navigate the environments Magnolia’s cousins sing Jingle Bells for hours because that
we are bringing her into? Will there be mindful people is what makes her happy. Those moments where looking at
where we are going in case we should ﬁnd ourselves in a 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. all trying to do our best. We all need to relish in the
beautiful moments of our lives. We know the holidays may
There may be many challenges, but there are also many be a blend of magic and meltdowns, unconditional love
joys that this season holds. We cherish every moment, for and uncomfortable situations, holiday music and anxiety,
they are ﬂeeting but so beautiful. This time of year, we take 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
endless, and we step forward conﬁdently into each and 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
has to oﬀer! I wish y’all, the happiest of holidays.
Family Advocacy and Support Team
Family Advocacy and Support Team
HOLIDAY 2018 3
“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 Annie Smith’s favorite recipes
17 Products for the holidays
21 EDUCATION Our gift guide is back!
25 Health and Wellness Susan Norwell’s holiday book
27 Girl Power 2 Cure recommendations!
Therapist tips for the holiday break!
Be inspired and get involved!
4 HOLIDAY 2018
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: Fluﬀy Slime-Squishy and stretchy just like the holidays should be!
• 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
knead the slime. This will be messy but will get ﬂuﬃer as you
knead. Keep squishing, kneading, pulling, and squishing. There
you go, ﬂuﬀy holiday slime!
• 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
• ½ cup Elmer’s Clear or white glue • Glitter
• 1 tablespoon Saline Solution (must • Confetti
• Food coloring
contains boric acid and sodium
• 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!”
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 is an amazing feat that we, as parent’s
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 with the Rett community, friends, family, and a place
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)...
For us, reﬂecting on all the things we have 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
diﬃcult to get used to. Realizing there wasn’t going thoughts and being able to convey them - this is all
to be that ﬁrst roll over, sit to crawl, grab of favorite a tremendous wall that science has helped to break
food (wait, there IS that one!!), or ﬁrst bicycle ride down. One of life’s BIG accomplishments: learning
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
bright and beautiful about that ﬁrst grab and hold of The Holiday... this is a time to place our focus on
the fork, that ﬁrst lean to acknowledge your what our kids can do, not what they cannot. Maybe
presence, that ﬁrst look towards you when you 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, doesn’t speak due to Rett) will not result in the
there has always been a continued hope that droopy “oh, I’m sorry” expression. Can we take this
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
We focus on all of life’s little accomplishments and 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 Things are just diﬀerent or done in a diﬀerent way.
a treasure, every quick look of acknowledgement is
HOLIDAY 2018 9
When I dwell on all things Rett, like during October 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
our lives: I have a home, a car, a job, and a family with 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.
literally anything to “ﬁx” what he can. I have a
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
know, dealing with many diﬀerent people who are
unable to understand what she is “cooing” or don’t want to miss the most excited “yes!” there is.
“uttering”, and she just goes with the ﬂow. “Peace”
For the holidays, let us all slow down and concentrate
on current traditions or building new ones. The
Walton’s will make our reindeer food and spread it
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
attention to early on). We will ﬁnd some special
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
years, and have a beautiful daughter, Laura Rayne,
who is 13 years old. Laura was diagnosed with Rett
Syndrome on March 14, 2007. Tina and Dave
support GP2C by holding annual Rockin' for Rett
events, attending as many events as time allows,
attending the Disney Princess Race Weekend, and
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
10 HOLIDAY 2018
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
• 3 medium Granny Smith apples, peeled,
cored, and diced into 1/4 in pieces
• 1 1/2 cups maple syrup
• 3 eggs at room temperature
• 3/4 cup light brown sugar
• 3/4 cup avocado oil
• 1 tablespoon vanilla extract
• 3 cups AP ﬂour
• 1 1/2 teaspoons baking powder
CAKE DIRECTIONS • 1 1/2 teaspoons baking soda
• 1 tablespoon ground cinnamon
1. Preheat oven to 350 degrees F. • 1/2 teaspoon ground nutmeg
2. Flour and grease 10 inch tubed pan. • 1/2 teaspoon ground ginger
3. In a large bowl, mix together maple syrup, eggs, sugar, oil and vanilla.
4. In a separate bowl whisk together ﬂour, baking powder, baking soda, • 1/2 teaspoon ﬁne salt
cinnamon, nutmeg, ginger, and salt. • 1 cup chopped pecans
5. Mix dry ingredients with wet ingredients, taking care not to overmix. ICING Ingredients
6. Mix in apples and pecans. • 1 cup powdered sugar
7. Pour into prepared pan and bake until skewer comes out clean about • 1/4 cup heavy cream
8. Cool in pan for 15 minutes, then invert onto a rack to cool completely. • 4 ounces cream cheese at room temperature
ICING DIRECTIONS • 1 teaspoon ﬁnely chopped fresh rosemary
• 1 teaspoon grated orange zest
1. In a food processor, combine ﬁrst 6 ingredients until combined. • 1/4-1/3 cup water
2. Add water to desired pourable consistency. • 2 teaspoons vanilla extract
3. Spoon icing over cake and allow to set 30 minutes before slicing *Splash of bourbon optional
(if you can wait that long!)
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
beneﬁt from a salty/sweet/savory crunch. You will deﬁnitely want to hide a jar for yourself.
SUGAR AND SPICE CANDIED NUTS ADAPTED FROM SMITTEN KITCHEN
• 1/3 cup dark-brown sugar
• 2/3 cup white granulated sugar
• 2 teaspoons kosher salt
• 1/2 teaspoon smoked paprika
• 1 teaspoon ground cinnamon
• Pinch fresh ground black pepper
• 1 pound walnut or pecan halves
• 1 egg white room temperature
(cold eggs are easier to separate...
sigh... such is life)
• 1 tablespoon water
SPICED NUTS DIRECTIONS
1. Preheat oven to 300 degrees.
2. Mix sugars, salt, cayenne, and cinnamon, making sure there are no lumps; set aside.
3. Beat egg white and water until frothy but not stiﬀ.
4. Add nut and stir to coat evently.
5. Sprinkle nuts with sugar mixture, and toss until evenly coated.
6. Spread sugared nuts in a single layer on a cookie sheet ﬁtted with parchment paper.
7. Bake for 30 minutes, stirring twice.
8. Remove from oven and separate nuts as they cool.
9. When completely cool, pour the nuts into a bowl, breaking up any that stick together.
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!
• 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
1. Char red bell pepper and fresh poblano over gas ﬂame or broiler until blackened on all sides.
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
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
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
to outﬁt your Rett boy than with Avengers ands h o p. g i r l p o w e r 2 c u r e . o r g
Star Wars themed socks.
23Disney Princess Fairytale Songs* WebRiderz Outdoor Swing N’ Spin
Enjoy all of your favorite Disney Princess songs with Hang this web swing from your tallest tree. Can seat
this wonderful compilation of all the classics from multiple people and hold up to 600 lbs. Multiple places
our favorite Disney Princesses! for child to grip or easy enough to enjoy laying down.
4Lukasa Bluetooth Beanie Hat, Unisex Fun to be had for days to come!
Knit Wireless Cap with Built-in Stereo Boxer Interactive, AI Robot Toy
Speakers & Mic Headphone Beanie (Blue), with remote control
65This stylish beanie has built-in wireless headphones Fun and interactive AI robot with a lot of personality.
Can be remote controlled, or Boxer is equipped to
perfect for when you are out and about on cold follow you and respond to your movements.
days-provides the ability to play calming music via
Bluetooth without sacriﬁcing warmth or comfort. Disney Princess Girls’ Long
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
2-Piece, Fleece Pajama Set*
Your Rett boy can now ﬁght crime while he
sleeps. This two-piece ﬂeece pajama set will
keep our adventurers warm all night long
while ﬁghting crime.
8 9TisyWonderfulQuiet Jellycat Bashful Dinosaur, Small, 7 in*
10Romantic Starlight This Bashful Dinosaur would make a great addition for
our little animal lovers, providing comfort and security
Light up your boy or girls’ room with this wherever they go.
mesmerizing light display. This lamp will
light up the room with the night’s sky, Think Fun What’s Gnu Game
11without disrupting sleep! The ultimate three-letter learning game! Teaches
word recognition, vocabulary building, and reading
12 Lite Brite
A great activity to do with your Rett girl or boy. Endless
possibilities with design and color combinations. Let
your girl or boy lead the way.
Xbox Adaptive Controller
Designed to meet the needs of gamers with
limited mobility, the Xbox Adaptive Controller
is a uniﬁed hub that helps make gaming more
HOLIDAY 2018 19
PRCMagAdNEW_p2_022218.indd 1 2/22/18 1:32 PM
Helping Others Recover the Power to Move
To learn more, go to www.neurologicalrecoverycenter.com
20 HOLIDAY 2018
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!
I hear from a lot of parents about the challenge of ﬁnding good gifts for their kiddos at the holiday time. Well, if you
know me at all, you know I will recommend books. Books are the cornerstone of great language development and
the perfect avenue for modeling and expanding communication. Our kiddos are so good at eye-pointing that they
can join in the book with their eyes if we are super sleuths at reading them. Plus, reading expands thinking,
experiences and is just plain fun! My current “faves” are the four from the summer book club listed below. You will
ﬁnd the link below it that leads you to the Rett-U Summer Book Club. The book is read by me via video and also
modeled on the page set that is downloadable from that same linked page. Enjoy and have a great Holiday!
WE DON’T EAT OUR CLASSMATES
BY RYAN T. HIGGINS
Penelope is just starting school and is a bit surprised
that all her classmates are children; delicious children
at that! This story is funny, sweet and a bit scary for
Penelope’s classmates! This is a book I never get tired
of reading aloud!
BY ROBERT MUNSCH
If you love Robert Munsch, and who doesn’t, you will
love this book about a girl that has her own ideas and
isn’t afraid to express them. I think this book is great for
a lot of ages, but I think it is great for those kiddos who
are at the age that they just want to be like everyone
else. Stephanie’s individuality and creativity make for a
very funny ending.
22 HOLIDAY 2018
THAT IS NOT A GOOD IDEA
BY MO WILLEMS
I just love anything by Mo Willems (remember Don’t
Let the Pigeon Drive the Bus)? Well, this one is even
funnier as a fox tries to ﬂatter a goose into visiting
his kitchen. The goslings steal the show in this book
as they shout warnings throughout! Be prepared for
a surprise ending.
WILFRID GORDAN MCDONALD PARTRIDGE
BY MEM FOX
Well, if you can get through this book without crying,
you are stronger than I am. Mem Fox always knows
the exact right words to choose to tell her story, and
this sweet story is no diﬀerent. We follow the young
boy in this story as he searches for his old neighbor’s
memories and ﬁnds the importance of love and
connection along the way.
HOLIDAY 2018 23
Rett Boy Spotlight
The Shukovsky Family and their son Grayson
Grateful for this Rare, but Beautiful Life.
There are about 60 of us - ﬁerce, strong, advocates - but you can call us Rett boy
moms. Our boys are resilient. They ﬁght, like us, every single day to be heard
and to survive... literally survive.
We are a rare bunch. If you google us, the life expectancy for boys is two years,
and then there is not much literature after that. We follow our fellow girls to
get insight into what to expect and for guidance, since those moms know
exactly what is going on. Thank you... seriously.
After chasing a diagnosis for nearly two years, seeing every doctor possible,
and two WES tests, we got the call in August 2017. We were devastated and shocked (he's a boy, hello! and he's two!). We felt
hopeless and scared for our future. We felt isolated – a boy with Rett Syndrome is a very rare diagnosis. We looked to Gray who
always smiles (it's as if he knows when we need it most), and in that moment, Alan and I looked at each other and said, "he's
perfect". Nothing changed for our family except that we had a name for his condition, but he is still the same sweet boy. Sure,
the regression happened, the seizures were more intense, and the side eﬀects of the meds changed him as Rett reared its ugly
head. Life with Rett Syndrome is challenging.
Fast forward to the present. Gray will be four years old in April. He will continue to beat the odds; he has thus far. He will get
into a trial, and he will beneﬁt from a treatment or a cure. He's a ﬁghter, and he's alive. We count each day as a victory, despite
the hardships we face, and the unexpected setbacks that Rett brings. Now we are hopeful. Every holiday, every birthday, and
every day that we awaken, we smile (sometimes behind the tears... the ugly cry tears). Why? Because we know that we are one
day closer to a cure.
This holiday season, we are thankful for the voice that GP2C and other
organizations have given to Grayson and his guy friends. We are grateful for our
family who are praying and standing beside us since we decided to open up
about Gray. We are grateful and humbled by the generosity of our close friends,
our new friends, and the kind strangers who have donated to this cause.
Most of all, we are grateful for Grayson. He is the light of our lives, a ﬁghter and
the most perfect little boy, still.
Grayson’s story, please consider donating:
24 HOLIDAY 2018
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 warnings, and use a ﬁrm grip. Light and unexpected touch
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 comfortable”, so that she can free some eﬀort to enjoy
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 8. Be speciﬁc and praise in ways that help increase the
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
by the generic “Good job”.
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
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:
● Rockin’ for Rett event (small venue to a large dinner)
● Run, walk or ride event
● Dinner party or dine-around
● Restaurant give-back nights
● 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!
Come join us for the Disney Princess Half Marathon Race
weekend in Orlando, Florida February 22-24, 2019. This
will be the 8th year Team GP2C will be part of the magical
experience. This weekend is ﬁlled with great events,
camaraderie and hope. We have Half Marathon and Fairy
Tale Challenge (10K and Half Marathon) bibs available.
Please join us for this amazing weekend to support all the
girls and boys aﬀected by Rett Syndrome. To learn more go
WANT TO HELP GIRL POWER 2 CURE FIGHT RETT SYNDROME?
HERE ARE 3 SIMPLE WAYS:
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!
Shop and make Girl Power 2 Cure your charity of choice on AmazonSmile and continue to #RiseAboveRett with every
purchase you make.
EMPLOYEE MATCHING PROGRAMS
So many employers oﬀer company matching to their employee’s charity of choice. Check with your employer and see if
this is something they oﬀer. You can also ask your family and friends to check as well. This is a great way to multiply your
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
When did you ﬁrst start running?
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. What tips would you give someone just starting out?
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
Why did you want to run Disney Princess? • Compromise and commitment are critical
• You will get stronger, and it will get easier
I love Disney Princess. My motivation is much diﬀerent now – • Remember – It’s your race!
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
ﬂourished from this race are priceless. I think of Rett children and across the ﬁnish line (you don’t have to run the whole race).
their every-day struggles. They run a race every minute of the day. Finishing is exhilarating, especially a half-marathon. The ﬁnish line
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
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 Why do you run?
happiness, and you are just in awe as you move through the park!
You gain strength and conﬁdence from the other runners, and you To feel strong, relieve
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.
How do you ﬁnd the time to train?
Training is hard – I cannot lie. Many days I wanted to skip (and
sometimes I did), but discipline returns, and I stay focused.
Scheduling training works best – put it on the calendar. I involve my
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
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
Gene Therapy Consortium. This will be the first human trial of an approach that targets Rett at its
genetic core and offers the potential of a cure.
While we anticipate encouraging results with our first gene therapy trial there will undoubtedly
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
protein replacement. We’re confident we have the right scientists working with us and that we’re
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
fully execute on our bold plans. I’m also proud to say that RSRT remains an extremely efficient
organization. We spend an average of 4% of funding on overhead expenses, so 96% goes directly
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.
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
cure-focused research progress, and the gratitude for our eﬀorts to make everyday life with Rett Syndrome as positive as it
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 we are making a diﬀerence!
As you read this ﬁnal 2018 edition of Rett Girl, our last substantial project for 2018 is in full-swing – The Power of Your Gift.
You have all been so generous throughout the year, and we hope that you will help close out 2018 on the highest possible
note! Here are a few ways you can support GP2C one last time in 2018:
• 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 –
please consider the power of “your story” and the impact of one more Facebook fundraiser for 2018! We have developed
fundraiser templates on our GP2C Facebook page which will make setup almost instantaneous!
• Remember your workplace matching programs – what a wonderful beneﬁt that so many of you enjoy, and the multiplying
eﬀect of corporate matching is a powerful tool to help us accomplish our goals!
In this season of reﬂection, thankfulness and of giving, we are so thankful
for you. And as we look forward to 2019 and more exciting research
developments, Rett University oﬀerings and caring family support via
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.
And ﬁnally, from our GP2C family to yours, we wish you a joyous and
merry holiday season.
Girl Power 2 Cure
HOLIDAY 2018 31
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Hope in Action 2019!
What does your hope in action look like?
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