PATIENT - PHYSICIAN RELATIONS
YUMMY RECIPES! THE EVERYTHING RETT SITE
RETT GIRL SPRING / SUMMER MAGAZINE 2016 © COPYRIGHT 2016 | WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED
We are honored to dedicate this issue of our
Rett Girl magazine in memory of Peter Li,
a legend in the educational publishing world
who helped inspire this magazine.
He shared a very special bond with his
granddaughter, Caroline, who has Rett Syndrome.
We hope to carry on his love of education,
publishing and family through our work.
2 SPRING SUMMER 2016
1. Happy Spring! This is one of my favorite seasons
because as you may not venture out in the cold as
Today was one of those unseasonably warm, ridicu- much in the winter, it is so refreshing to get outside
lously sunny days. One of those days where the and breath in the fresh air of spring. Seeing the new
outdoors just begs for you to come out and enjoy, blooms of the ﬂowers makes me reﬂect on life so
where the air smells fresh and the sun like a blanket much.
that wraps right around you.
Just like the Girl Power 2 Cure Flower, it brings our
After hibernating through another cold Michigan family so much HOPE! Spring is our sign of hope.
winter spring feels like a light at the end of a chilly New beautiful ﬂowers waiting to bloom and share
tunnel. their beautiful, bright, colors with all of us! Our girls
are waiting for all of us to share their stories and
I love Spring! It’s a time where we start to venture their beautiful faces with the world.
out again, catch up with neighbors, start making
plans for BBQ’s, take nice long walks and just enjoy! Making a diﬀerence one beautiful "ﬂower" at a time.
Life is just a little easier when you’re not worried We encourage you to step out of your comfort zone
about freezing cold toes and ice on the roads! this spring and allow yourself to bloom. Make a
diﬀerence in the life of those who suﬀer with Rett
We hope that wherever you are on the globe, weath- Syndrome!
er you are thawing out or heating up, that you ﬁnd
this season to be a great time to foster new relation- Kristin Hileman
ships, new goals , new joy and especially new hope! Family Support Team Leader
We had all those things in mind when putting Girl Power 2 Cure
together this magazine and its our hope that with [email protected]
each page you will see something new that sparks
your interest and beneﬁts you, your Rett Girl and
Rett Girl Coordinator
SPRING SUMMER 2016 3
M aga zine
“No matter how long the winter, spring is sure to follow.”
We’ve broken our Spring/Summer
Rett Girl Magazine down into seven
Click the category to navigate to each section
5 ACTIVITIES Great list of activities and DIY’s
11 Recipes Delicious dishes everyone can enjoy
17 SUMMER BREAK Great camps for kids and
21 PRODUCTS how to ﬁnd respite for parents
Must-have items for this season
24 EDUCATION Keep learning through the break
28 Health and Wellness Patient-Physician Relations
31 Girl Power 2 Cure What’s going on and how to get involved
4 SPRING SUMMER 2016
LIVE IN THE SUNSHINE, SWIM THE SEA, DRINK FROM THE WILD AIR
RALPH WALDO EMERSON
SPRING SUMMER 2016 5
C e l e b r at e Pa r e n t s !
A Mother's Day gift idea that she can help make!
A Beautiful Pot for mom! htehUrTespepirpaehsfia:nentrrdoerodvaeclrhoowhicaenhedmrtatokoihnceghlpomoyseotehuortdhRe. ecttoloGrisrlussqinuegezeNoWoﬀNPwthOoothTehTyunenunewoEreFrae:uﬁncwaowdDs’oxnrroagshleoieppxovesenareaharepoe’scprpettaafhoeetdaopdthnrrpl,hfeyleleatroerweoo.tnwpatopjadoceftxotptohtcahetvpltesaervseoaynpmoaarpotionryteuiitmtot’eorso.wtddtuohbSydrrirmeqyoilroplwyrut’o.fnstsoebovaedfreeemcaekozrtrvdewnwyasolriaipnerigedciaeThateteiepnh!tnuraeaﬂctrpianonosadiarwtCdostopeesupt!er.nt.leaudlspsoot,me
T h e c e l e b r at i o n c o n t i n u e s
Dad needs a homemade gift too!
Trace your Rett Girl's hand onto freezer paper and use an X-Acto knife to
cut it out. Iron the cutout (shiny side down) onto a dark colored shirt in
dad’s size. Hang the shirt outside and spray around the cutout with a
mixture of a small amount of bleach and water (Make sure not to spray
too much or it could show on the other side). Let the shirt dry then wash
it with the wax paper still attached. A perfect gift for the perfect dad!
in by mAcuiddtddtilneagosfapetScheimahlaatl onHudcechaurttout
6 SPRING SUMMER 2016
C e l e b r at e M o t h e r E a rt h
Homemade Bird Feeder
For this super easy bird feeder all you need is a toilet
paper roll, some peanut butter, seeds and a pipe cleaner.
First, hole punch 2 adjacent holes at the top of the toilet
paper roll. Next, spread peanut butter all over the roll.
Then, use hand-over-hand to help your Rett Girl roll the
tube into the seeds. Lastly, thread the pipe cleaner
through the holes and hang it on a tree.
F i r e w o r ks A lt e r n at i v e
Great ideas to celebrate without the anxiety
Whether or not your Rett Girl loves 4th of July An Indoor Light Show!
ﬁreworks or they send her into a panic attack, ALL kids
LOVE being part of a celebration! Why not try watching SPRING SUMMER 2016 7
the ﬁreworks indoors where the noise is buﬀered, stick
with sparklers, have fun with glow-in-the-dark bubbles
or any of the fun glow-in-the-dark products on the
Head out the Door!
Join in the fun this summer
Spring has Minor League Baseball 4th of July
Who doesn’t love seeing a ball Some Rett Girls can’t handle the
Spring is time to get outside game? Head on out to cheer on your noise of ﬁreworks while others
and get moving! Stored local Minor League Baseball team. LOVE it! If you’re Rett Girl is one
energy from the never-end- You’re Rett Girl will love the excite- who enjoys the lights and booms
ing winter inside can ﬁnally ment and the price is much easier to check out The Travel Channel site
be released outside in the swallow than the Major Leagues! for a listing of some of the best
fresh springtime air. Many of Visit this site: http://www.milb.com spots in the country to watch the
our Rett Girls experience to see the teams, leagues, schedules ﬁreworks!
colds and illnesses during the and even buy tickets online. tinyurl.com/ms82kgz
winter, but the germs tend to
disperse with the warmer County Fairs Parades
weather. Enjoy getting out,
and if you need a little assis- There are always cool things to do, Whether it’s Memorial Day, 4th of
tance see page 20 for ideas see and EAT at the fair! Take the July or another occasion, spring and
on how to ﬁnd a caregiver. whole family for a fun-ﬁlled day out summer are a perfect time for a
and about. Check out county fairs in parade! Enjoy the outdoors, watch
your area here: the ﬂoats and join in the festivities!
www.countyfairgrounds.net/ Check out a listing of United States
Sprinkler Parks www.usa.worldweb.com/Events/Parades
Looking for a great way to stay cool Local Concerts
but enjoy the sunshine? Head out to So many of our Rett Girls just LOVE
music! Why not head out to a
a sprinkler park! If your Rett Girl has concert? Check your local websites
for symphonies, bands, and musi-
Many bowling aleys have ramps a rolling shower chair or an older cians playing at a venue near you!
our girls can use to push and guide wheelchair that you wouldn’t mind
a bowling bal down and onto the lane. getting wet, you can push her
www.kidsbowlfree.com through the sprinkler park to cool
oﬀ and have fun! Or, get her onto
her feet and get some therapy in!
Check your local county or city web-
8 SPRING SUMMER 2016 site to ﬁnd a sprinkler park near you.
OTHER IDEAS Art Shows Miniature Golf
1. Hthaevepaarkpicnic at Does your Rett Girl love art? Why Everyone can play miniature golf!
2. Visit a petting zoo not visit a few art shows this Use hand-over-hand to help your
3. Head to the mall season? This website allows you to Rett Girl swing the club. Get some
search listings of art fairs by state: therapy in by getting her on her feet
on a rainy day http://festivalnet.com/art_fairs.html to putt and even walk to the next
4. Enjoy the paddle hole! Check out the 10 most unique
BIKE PARADE mini golf courses in the U.S. at this
boats at your link: tinyurl.com/j7deltm
local beach Grab siblings, neighborhood kids and
5. Feed the ducks! friends! Take streamers, balloons Visit Your Local Library
and party supplies to decorate all the
bikes. Now parade up and down the Keep her mind sharp and engaged
street, through the park or neighbor- by fostering a love of reading! Your
hood! Take along a little music and local library can be great for check-
you’ve got your own Parade! No ing out new books, borrowing
bike? No problem! Decorate your audiobooks, and even getting some
Rett Girl’s stroller or wheelchair! educational videos. Your library
might even have a summer reading
Invtitioenuytthdueooronvlre.ecribgofohmowbro/liranhhgnmoogvdammkwied7sq Horseback Riding program with gifts or prizes that you
EtvIhifeanrvyyyeoouuanrrelb.RlcoikevoteetmsfGi/ntiojdrjlnrodid7noeeveqsbanxti’ktes! can take advantage of. Plus, it’s a
The spring and summer are a great great place to go to beat the
time to try something new! Have summer heat!
your Rett Girl try horseback riding
(clear it with her doctor ﬁrst). This Visit Your Local Farmers
activity is also a great therapy for
walking, increasing core strength Did you know that eating food
and so much more. For a listing of grown in the local area cuts down on
therapeutic horseback riding stables the money, energy, and resources
near you check out this website: needed to ship the food to you. By
www.pathintl.org cutting down on the natural resourc-
es used to transport your food to
National Parks Pass you, you’re doing your part to help
the environment. Check your
Did you know that you can get into county website and ﬁnd a farmers
any National Park in the nation with market close to you!
a Free Access Pass! This pass
admits a disabled person plus SPRING SUMMER 2016 9
everyone riding in their vehicle.
For more info:
You Can Do it!
The warm weather is a perfect time to create and try new things!
Make your Own Adaptive Markers
All you need are some Styrofoam balls and short markers.
Use a drill to put a hole in the balls just slightly smaller than
the diameter of the markers. Place the markers in the hole
and you’ve got a marker that is much easier to grip!
Bottle Top Stamps
Perfect for any occasion! Take the tops of water or pop bottles and
glue foam stickers to the top. You can glue a cork onto the bottom of
the bottle top for a handle. Now, use hand-over-hand to help your Rett
Girl dip the “stamp” into paint or ink and stamp on a card or craft!
Super Cute DIY Headbands
Summer is the perfect time for some new hairbands.
Check out this easy-to-follow tutorial:
Hands-Free Card Holder
Get out a card game for those rainy spring days and let
your Rett Girl “hold” her own cards!
VISIT www.pinterest.com/rettgirl/diy FOR MORE PROJECTS!
10 SPRING SUMMER 2016
R e c ip e s
OUR FOOD SHOULD BE OUR MEDICINE AND
OUR MEDICINE SHOULD BE OUR FOOD
SPRING SUMMER 2016 11
Girls Just Wanna…Eat Real Food!
JulCiOe -&FOTUoNnDEyRBS, oRmEAbLaFcOinOoD&BLSENoDnS AJ IngrFidOUHNaDrEdRin, GgIR&L PDOaWuEgRh2tCeUrRSE arah
Born from a mom & dad’s love for their tube-fed son, Real Food Blends
makes 100% real food meals for people with feeding tubes. No corn
syrup or preservatives, just real ingredients to nourish your body and
soul. We’re excited to partner with Girl Power 2 Cure and Rett University
to provide better education, support and nutrition options to all of you
living with Rett Syndrome and a feeding tube.
LEARN MORE OR ORDER AT
Warm Weather Meals
Tips and recipes from a Rett mom
Marie Bateh, Rett mom and founder of The Suki Foundation, shares Visit Your Local
“It’s really hard to speciﬁcally say, ‘here’s a recipe.’ Everything depends on Farmers Market!
the child’s weight, diagnosis, intolerances and nutritional needs. Each parent
should research the health guidelines for protein, caloric intake, and ﬂuid portions Because there’s less travel
that’s right for their child. Need a good resource? Try www.mypyramid.gov.” time, produce from your
Farmers Market is fresher
Breakfast Lunch than what you might get in
grocery stores. Incorporate
•1 egg fried in butter •1-2 TBS peanut butter local, seasonal fruits and
•1TBS coconut oil •¼ avocado vegetables into your blends.
•¼ cup walnuts •2 oz cooked quinoa or rice When you get home wash,
•1 apple (sliced) •1 TBS oil prepare and blend batch
•4 TBS coconut meals and then freeze in
(coconut, sesame or olive) freezer bags or containers in
unsweetened ﬂakes •1 fruit (sliced) correct portion sizes. This not
•4-5 oz rice milk or liquid of choice •Blend with bone broth, only keeps your food at the
•1 TBS Flax seed peak of freshness but it also
milk or liquid of choice gives you quick meals to use
*Mix on soup setting in a when you’re short on time.
high-powered blender until it’s *Mix on soup setting in a
thin enough to use with a high-powered blender until it’s
feeding pump. Add more liquid thin enough to use with a
if needed. feeding pump. Add more liquid
“Free water is very important, especially for constipation. Aloe Vera juice and
apple cider vinegar are natural alternatives that you may want to talk to your
To learchild's doctor about to help with reﬂux.
how to stnaarbout”Table to blender meals make dinner time much easier for busy families,
visit the t a blended dietusually you can just add a little extra fat (oil or nuts), blend and you’re good
Rett Girl Blogto go! A good blender is a MUST, Blendtec or Vitamix! Be aware that volume
tolerance and digestion play a HUGE role. It takes a lot of practice to ﬁgure
Thrive Marketout what your daughter’s tummy can tolerate. Bottom line: Real food is more
organic foods offers natural andnutritious than formula, but it takes work.”
delivered right taotywohuorledsoaolre sptreicpe!sVisit gp2c.org/thrive
SPRING SUMMER 2016 13
Perfect recipes for the summer that everyone will love!
Gluten is a protein that is found in grains such as wheat, barley, rye and malt. Gluten is one of the most diﬃcult
proteins to digest and can cause inﬂammation in the small intestines as well as painful gas, bloating and
constipation. Fortunately gluten-free diets are gaining in popularity and it’s easier than ever now to remain
gluten-free while still enjoying great foods! We encourage all of our Rett families to research for themselves and
consider removing gluten from their Rett Girls' diets. Find more information on our
Peanut Butter Fruit Dip – From CookingClassy.com
• 2 (5.3 oz) containers
Vanilla Greek Yogurt
(or 1 slightly heaping cup)
• 1/3 cup creamy peanut butter
• 1 TBS honey, or to taste
*You can increase the nutrient
density of this dip by
substituting almond butter
and using organic, raw honey.
Serving Size PREP TIME TOTAL TIME
6-8 5 5
• Add all ingredients to a bowl and whisk to blend until smooth.
• Serve with fruit (recommended bananas, apples, raspberries or strawberries).
• Store in refrigerator in an airtight container.
14 SPRING SUMMER 2016
Quinoa is a gluten-free grain that has been around for thousands of years. It’s rich in anti-inﬂammatory,
antioxidants, phytonutrients and ﬂavonoids. Quinoa is a good source of protein and has a high content of
essential amino acids. It’s also high in ﬁber and B-vitamins which make it more nutritious than many other
grains. It cooks fast and can be a great substitute for rice in many dishes. Here is a nutrient-dense recipe from
Quinoa Salad - from FoodNetwork.com
Serving Size PREP TIME TOTAL TIME Ingredients
6-8 20 20 • 12 cups water
• 1 1/2 cups quinoa, rinsed
MIN MIN • 5 cucumbers, peeled and cubed
• 1 small red onion, cubed
• 1 large tomato, cored, seeded,
• 1 bunch Italian parsley leaves,
• 2 bunches mint leaves, chopped
• 1/2 cup extra-virgin olive oil
• 1/4 cup red wine vinegar
• 1 lemon, juiced
• 1 1/2 teaspoons salt
• 3/4 teaspoon freshly ground
• 4 heads endive, trimmed and
separated into individual spears
• 1 avocado diced, for garnish
Bring the water to a boil in a large saucepan. Add the quinoa, stir once, and return to a boil. Cook uncovered, over
medium heat for 12 minutes. Strain and rinse well with cold water, shaking the sieve well to remove all
When dry, transfer the quinoa to a large bowl. Add the cucumbers, onion, tomato, parsley, mint, olive oil, vinegar,
lemon juice, salt, and pepper and toss well. Spoon onto endive spears, top with avocado, and serve.
SPRING SUMMER 2016 15
Mustard Lime Chicken – From Elana’s Pantry
• 1 lb skinless, boneless
• 1/2 cup fresh lime juice
• 1/2 cup fresh cilantro, chopped
• 1/4 cup Dijon mustard
• 1 TBS olive oil
• 1 TBS chili powder
• 1/2 tsp sea salt
• 1/2 tsp pepper
Serving Size PREP TIME TOTAL TIME
2 15 30+
Combine lime juice, cilantro, mustard, olive oil, chili, salt and pepper in a food processor. Pulse until ingredients
are well combined. Museum
Rinse chicken breasts, pat dry and place in an 7 x 11-inch Pyrex baking dish. Pour marinade over chicken, cover
and refrigerate for at least 15 minutes or up to 6 hours.
Heat grill and cook chicken for 5-7 minutes per side until browned and cooked in the center.
Have a great recipe? MUSEUM
Email [email protected]
and it could be featured
in our next guide!
16 SPRING SUMMER 2016
THE HAPPIEST PEOPLE DON’T HAVE THE BEST OF EVERYTHING, THEY
MAKE THE BEST OF EVERYTHING.
SPRING SUMMER 2016 17
Join the Adventure
There’s so much fun to be had!
Some of the greatest, most Overnight Camps Finding the
memorable times in a kid's life Perfect Camp
are spent at summer camp! Overnight camps can get a little scary when
you are dealing with a non-verbal child. Keep in mind your Rett Girl's
Camp Directories However, it can also be a very exciting and interests. Does she love music?
rewarding experience for your Rett Girl. Animals? The water? Is she a
Here are several special needs camp Some things to keep in mind when thinking morning person or does she do
directories to check out: about an overnight camp is the medical better in the afternoons?
facilities available, if the staﬀ is trained on What’s your comfort level?
Federation for Children with the communication system your Rett Girl Finally, by law, a child cannot be
Special Needs Camp Directory uses, and the ratio of staﬀ members to kids. denied admittance to a
Ask for references so you can talk with other program because of her disabil-
http://fcsn.org/camps/ is a resource that families that have sent their child to camp. ity so don’t feel you can only
has information about how to ﬁnd a camp Visit the camp if you can before deciding if search for programs speciﬁc to
for your child as well as links to over 200 it’s the right choice. Consider staying at a special needs. With the right
camps serving kids with special needs. nearby hotel or campsite for the week while resources and planning your
your Rett Girl is at camp, it may give you Rett Girl will have a GREAT
Easter Seals Camp Directory peace of mind to be closer to her and oﬀers experience at camp!
you a chance to get away and have a vacation
Easter Seals oﬀers a camping and recre- as well. wwwFS.opurrmaemnleistrtriCnogammo.cpfosA:mvAi/sCcita: mps
ation program that serves children, adults
and families of all abilities. Family Camps
A family camp is a great way for the whole
Kids Camps Directory family to get away and experience the great
outdoors! This may be a good option for
www.kidscamps.com is an online directory those who aren’t yet ready to allow their
where you can search for camps by age, Rett Girl to be at camp on their own. Check
state, country and disability. with local and national family camps and
ask about their accessibility.
Day camps can be a great way for Rett Girls Recreational Programs
to get up and out during the summer break
and are a nice alternative to overnight These often oﬀer half or full-day programs
camps. In addition you can check with your and usually are an aﬀordable option but may
local parks, zoos, farms, museums and have residency requirements. Check with
nature centers that may also oﬀer day camps your local school district, churches, Boys and
and have the resources to provide 1:1 aids. Girls Clubs or YMCA’s that may have
programs for special needs kids.
18 SPRING SUMMER 2016
at - h o m e ca m p !
Summer camp for your rett girl
builT around her schedule!
DAILY AGENDA Camp Amica was created by Rett mom and GP2C former Board
SAMPLE Member, Emilie Rabke. Her goal as a Summer Camp Host is to
enjoy the summer season with her two daughters and
9:30 AM ARRIVAL & WELCOME/ DAILY neighborhood friends incorporating learning and fun while
AGENDA DISCUSSION building lasting friendships.
This fun 3-day at-home mini camp is geared for kids ages 6-11.
You can do just one session or repeat with diﬀerent themes
throughout the summer.
9:45 AM THEME FOCUS & FACTS/
10:30 AM FREE PLAY OUTDOORS OR
DEPENDING ON GROUP AND DAY
11:00 AM JOURNAL ENTRY INSPIRED BY
"QUESTION OF THE DAY"
11:15 AM LUNCH TIME Camp Amica! summer fun
12 PM DAILY SPECIAL: SPECIAL GUEST
OR THEME RELATED EXPERIENCE
FREE PLAY OUTDOORS
DEPENDING ON GROUP AND DAY
12:15PM STORY CUBES CREATE Themed sessions include:
"STORY OF THE DAY"
The artist in me!
12:30PM SHOW & SHARE WITH around the world in 3 days
PARENTS / DISPLAY HIGHLIGHTS OF DAY christmas in july
AND WEEK the 3 r’s of Recycling
DISMISSAL Mystery week
get ready to rock & roll
SPRING SUMMER 2016 19
Finding a Caregiver
Searching for a diamond in the rough
There’s no doubt that ﬁnding a caregiver for your Rett Girl can be one of the most diﬃcult, frustrating and
heart wrenching things to do. You want to ﬁnd the perfect person but it’s so diﬃcult to know where to look
for the right candidates.
Below is a list of ideas and links on where to start in your search for a great caregiver. Our hope is that you
ﬁnd that perfect person, they become a wonderful friend to your Rett Girl and an extension of your family.
We hope that you ﬁnd that diamond in the rough!
LOCAL COLLEGES WEBSITES ADDITIONAL RESOURCES
Universities and Colleges Several websites allow you Look into places where
can be a great place to look to search for caregivers in people are already familiar
for caregivers! You can post your area. You can view with your Rett Girl. This
a generic ad on the Univer- their background, training, way there’s already a
sity's website or take it a education and experience. relationship and an idea
step further and contact the Most of these resources about what is needed and
speciﬁc departments that require a fee and typically what is expected from the
might be a good ﬁt, such as: it’s charged monthly. caregiver.
• Physical Therapy
• Special Education USA: Schools: especially in the
• Elementary Education www.care.com summer a one-on-one aid,
• Occupational Therapy www.archrespite.org support staﬀ, teacher or
• PreMed www.sittercity.com therapist may be interested in
• Nursing working with your daughter.
20 SPRING SUMMER 2016 www.skybadger.co.uk Churches: teachers,
www.childcare.co.uk volunteers and even friends
who you have met through
Visitftoirnfyiunfdrolir.ncg1o2amtic/pazsruejggivue6r 6 church are great people to
approach as possible
assistants, and students may
be looking for extra hours,
income or experience and will
already be familiar with your
Rett Girl's goals and abilities.
ALL KIDS NEED IS A LITTLE HELP, A LITTLE HOPE, AND SOMEONE
WHO BELIEVES IN THEM.
-- MAGIC JOHNSON
SPRING SUMMER 2016 21
PERFECT SUMMER PRODUCTS
OUR TOP LIST
LOOK WHAT WE FOUND! WE HOPE YOU FIND SOMETHING FUN!
1Surround Brush Times Tales
Make brushing quicker and learning over summer break but
easier! The Surround Tooth- make it FUN! Times Tales DVD is a
brush has a unique 3-bristle creative, innovative mnemon-
pad design to clean all ic-based program that makes it fun
surfaces of the teeth at the and easy to memorize the upper
rettgirl.org/2016/02/6094C O O L multiplication facts. It uses cute,
simple stories to help students
3 2SnapMeSwimwear quickly recall otherwise abstract
S T U F F ! facts.link:
4SnapMe Swimwear makes diaper changing rettgirl.org/2016/02/6099
a SNAP! Undo the snaps at the bottom, Trampoline
change the diaper, and snap it back up! The
best part is the swim suits come in several This trampoline is perfect for sunny days outside or
rainy days inside! Help your Rett Girl get onto the
5adorable patterns, they have extra fabric ortrampoline, position her hands to hold on (doing
hand-over-hand if necessary) and with your foot
“bounce” the trampoline slowly up and down – or faster
if she likes it! rettgirl.org/2014/11/5243
If I Need Help
QR code readers that link to a password
protected secure website that can be
used to keep important personal medical
and emergency information. An added
bonus is you can support Girl Power 2
Cure with your purchase!
ruﬄes built in to cover swim diapers and
come in sizes 6 months to 6 Toddler!
22 SPRING SUMMER 2016
H AH NE LDP YE R SGREAT PRODUCTS FOR ALL OF YOUR TRAVELS! AFO Socks!
Inﬂatable Mattress with Sides Not your ordinary AFO
socks, these are ADORABLE,
If you’re going to be doing any traveling this season trendy and super stylish!
6this inﬂatable mattress with sides is a must! Special
Grand Trunk Parasheet
signature rails protect kids from rolling oﬀ and give
you peace of mind! rettgirl.org/2013/10/4582 A beach blanket made from nylon
parachute material—it dries in
78ButlerBoot minutes, is mildew resistant, and
stays cool to the touch even in the
Butler has reinvented the old-school blazing sun. Weigh it down via
overboot to deliver a bold, innovative and built-in corner pockets that can be
instantly iconic brand of protective ﬁlled with sand.
footwear for kids.Available in six distinc- rettgirl.org/2016/02/6106
tive and unique colors to start and sizes
ranging from Childrens 8 – oYuth 3. These EazyHold Grip Assist
boots are designed to ﬁt over shoes so they
EazyHold™ is a simple but
9are PERFECT for AFO’s and splashing in innovative grip assist
strap that easily attaches
puddles! to tools, toys, utensils and
more! It enables children
10rettgirl.org/2016/02/6104 and adults with limited or
no grip strength to achieve a
more independent lifestyle.
zipOnsTM pants o er your recovering child the
opportunity to feel covered and comfortable with ease.
w w w . b e f r e e cSPRING oSUM. cMEoR m2016 23
IF ALL YOU SEE IS RETT SYNDROME, YOU WILL MISS; LOVING,
S M A RT, F U N N Y, S W E E T, I N S I G H T F U L , U N CO N D I T I O N A L ,
EMPATHETIC, UNIQUELY OBSERVANT, IMPECCABLY TALENTED,
EVER SO INTELLIGENT, AND CAPABLE OF CREATING
EXTRAORDINARY CHANGE IN THE WORLD.
24 SPRING SUMMER 2016
Ways t o E n g a g e w i t h E - B o o ks
Make reading FUN this summer!
Audible Epic! Raz Kids
www.audible.com www.getepic.com www.raz-kids.com
Audible is the world's largest Epic! is for ages 0 -12 and Raz Kids is a fantastic
website for kids in grades K-5.
provider of audiobooks and provides an unlimited selec- It offers hundreds of interac-
tive and leveled eBooks span-
premium spoken word tion of eBooks that can be ning 29 levels. Students can
first listen to books, then read
programming. Choose from instantly discovered and read. them for practice and each
eBook has an accompanying
more than 180,000 titles from Personalized for each individ- eQuiz to test reading compre-
hension. New books are
all genres and age groups. ual reader, Epic! is the only added every month including
Spanish, Song, Nursery
Your Rett Girl can listen to place to access thousands of Thymes, Poetry and more!
There’s a free trial so you can
books wherever, whenever on high quality, curated try it out before you purchase
her computer, tablet or smart children's books without the
phone with the audible or need to purchase or download
kindle app. Audible works like them one by one. Beautifully
a club where you pay per designed for mobile and
month and receive a credit for featuring fun, game-like
a new book. In addition, you elements, Epic! provides kids
will get a 30% discount off all with a personal library they
purchases and you can cancel can take anywhere. Epic! is
at any time. available on all iOS and
Get a free trial month that Android devices. You can get
includes two free audio books
here: tinyurl.com/zdyto8w your first month free to try it
out and then it’s $4.99/
ifsatnhudefC’sfaheelhrdoctewtkatposdo:/yuint/thtgrheetahstaitttsgnohiirBmrayl.saolburleo'lgistop/okm2osst0yohou1n5ntec/hnhc1ra1te/oobrn6tlmi0eazd2ioanv0teiaoapnpss! It httuwtirspotnR:rh/sadae/nsattrhedieaentnrttBpcgeeaoorirhuaogli.rkgoecasrsthgiglivOgw/eenhs2illttii0bnehe1doear2u!ar/wtlr0yEyht3Zeolio/ntufe3cTrrh0baeaaa3ocoldyn0ek.d.s/sthe
SPRING SUMMER 2016 25
E D U CAT I O N I S I M P O RTA N T !
LET EVERYONE KNOW HOW SMART SHE IS! WE HAVE THE TOOLS
TO TEACH OUR RETT GIRLS. IT’S JUST A CLICK AWAY.
Rett University is an international e-learning platform speciﬁcally designed for parents, educators and
therapists of Rett Syndrome students. Experienced professionals share their cutting-edge knowledge on
how to support their students with Rett Syndrome and guide them to their highest levels of academic,
physical and personal achievement. Website: www.rettuniversity.org.
CHOOSE FROM 10 courses TO INCLUDE: NEW!
GETTING STARTED WITH TOBII EYEGAZE FREE RESOURCE
Emergent literacy for girls with rett syndrome part 1 & 2 SECTION
Guided reading for girls with Rett Syndrome Part 1 & 2
THE POWER OF MUSIC
CFhelicpkBouootRkoseutratvn-aeUiwlabSCletonomormweunaitcatthieon CREATING SOCIAL CONVERSATIONS
Building Social Communication- From Story Co-Construction to Narratives
Communicator 5- Setting Up, Customizing and Communicating- Part 1
WELCOME NEW INSTRUCTOR KATE AHERN!
Kate Ahern, M.S. Ed has over 15 years experience working
with special needs students and has presented at numerous
conferences across North America on key topics such as
communication, literacy and AAC and leads an AAC camp for
families in the local Boston area.
Two courses she will be oﬀering through Rett University:
Bringing AAC Home
Designed for parents and caregivers in the home this
course will address implementing augmentative and
alternative communication in the home regardless of which device or system
the child uses or how old the user is. We examine using the Motivate, Model, Move Out of the Way frame-
work for the natural teachers of language - parents - to start and increase AAC in home and the community.
Pushing Communication Further Using iPad Apps - COMING SOON!
26 SPRING SUMMER 2016
FUN & INTERACTIVE LEARNING
Tiny Bop Apps
Who knew learning could be so much fun?!
NOTE: Tiny Bop apps are currently only available for iOS.
Make these apps The Human Body Simple Machines
even more fun
and exciting! Explore a working model of the body. Every- Explore the playful side of physics! Experi--
With just an HD TV, an HDMI part is interactive: the heart beats, guts ment with six simple machines, discover how
cable, an internet and a wireless gurgle, lungs breathe, the skin feels, and eyes they work, and investigate the invisible
network (which most of us see. Designed for kids to discover what we’re forces behind them. Destroy a castle, make
already have) you can UP the fun made of and how we work. Explore seven music, send satellites into orbit & more!
on these educational apps with interactive systems to learn basic human Simple Machines integrates with STEM
the Apple TV! Using AirPlay you anatomy, including the skeletal, muscular, curriculum: kids can alter and test each
can play these apps from your nervous, circulatory, respiratory, digestive, machine to learn about force and motion,
iOS device wirelessly right on and immune systems. Even learn new vocab- actions and reactions, inputs and outputs,
your TV! The result is obviously a ulary with text labels. This is a VERY COOL conservation of energy, mechanical advan-
much larger screen, but also app and is really fun for ALL ages! The app is tages, and tradeoﬀs. Get free worksheets at
better sound, and more engaging designed for both the iPad and the iPhone tinybop.com. Like all the tiny bop apps, this
overall. There are 2 Apple TV’s and runs $3.99, very much worth the price, one does not disappoint and is jam packed
available, the 3rd generation but if your not sold yet try the Lite version for with all sorts of learning tools! Designed for
which runs approximately $69 FREE. tinyurl.com/zlrs5h9 the iPad and iPhone and runs $2.99:
and the new 4th generation There are also some in-app purchases that tinyurl.com/jxgqk93
which runs approximately $149. you can make for more body systems.
The 4th generation oﬀers a few tinyurl.com/lqvrtdl Plants
more bells and whistles but both
have AirPlay. Check it out and see The Earth Unearth the secrets of the green kingdom!
which is right for you! Dozens of species spring to life and new
www.apple.com/tv/compare Dig into our planet and the geological forces surprises arise with every adventure in this
that shape it. Trigger earthquakes! Make STEM-aligned digital sandbox. Explore
WSaptneitnctiyaoTul gPirnelry.ticcaoBinlmogtph/oezhnsalweBsaunnpldbplsve?s! volcanoes erupt! Investigate plate tectonics, interactive dioramas of the forest, desert,
weathering, erosion, and deposition. Travel and grasslands. See detailed illustrations
across time to see how our home has that show plants and animals in their natural
changed over eons, pre-Pangea to the habitats. Let your Rett Girl conduct the
present. Your Rett Girl can see the Earth weather, ignite a wildﬁre, burrow with
transform over time, experiment with volca- barking critters or have her plant an acorn
noes, dig under the surface and observe the and watch it grow into a tree! There’s so
earths layers from crust to core! This is much that you can do with this great app! It's
another app that spans all ages, its fun for designed for both the iPad and iPhone and
everyone! Designed for the iPad and iPhone runs $2.99: tinyurl.com/ozu8fr8
and runs $2.99: tinyurl.com/p2kz5dm
SPRING SUMMER 2016 27
a h and Wellness
HEALTH IS THE GREATEST GIFT, CONTENTMENT THE GREATEST
WEALTH, FAITHFULNESS THE BEST RELATIONSHIP.
28 SPRING SUMMER 2016
Getting the Best Care
Patient – PHYSICIAN Relations
By: Megan Nunn, pharmacist and mom to two beautiful girls, Ava (RTT) and Cecelia
Without a doubt, one of the most critical 2. Don’t be shy about getting a second Organize Her
aspects of our daughters’ care is the quali- opinion if you’re in doubt, or switching Medical Chart
ty and wisdom of their physicians. In the physicians if yours isn’t a great ﬁt. The
past two years we have learned a LOT second opinions we’ve gotten have really The simplest way to organize your
about the importance of maximizing eased my mind on a few occasions, and we Rett Girl's medical records is to use a
relationships with these important people. have started running most of our local three-ring binder with diﬀerent tabs
Our daughter Ava started seeing special- doctor’s recommendations by our Rett for insurance, prescribers, therapists,
ists right after her ﬁrst birthday, and I have specialist just to make sure we’re on the education, etc. For a helpful summary
gradually transitioned from a ﬁrst-time right track. If there is a Rett clinic near you, website visit:
mama excited about well visits to a staple it could make a great diﬀerence for your tinyurl.com/guyh4ru
at the local children’s hospital on a daughter and your peace of mind to have
ﬁrst-name basis with the parking atten- someone on board who has extensive You can also ﬁnd a list of documents
dants. I have to preface this by saying that experience with Rett Syndrome. that can be printed and ﬁlled out
we have been incredibly blessed by the about your Rett Girls health that you
team Ava sees. She adores them and they 3. Make your daughter’s appointments can then ﬁle in her notebook here:
love her too. Somehow the hospital is one count. Keep a list of questions that come tinyurl.com/z5y3f2h
of her favorite places, and she smiles and up between visits and make every eﬀort to
interacts with everyone there like she’s get them all answered while you’re there. In addition, there are apps like My
running for oﬃce. (This is VERY unusual for Keeping a ﬁle of doctor’s notes, lab and Medical that allow you to enter health
her! We think she senses that these people test results, and therapist evaluations is and medication information on your
can help her so she really turns on the really helpful when you start going to a computer, tablet or smart phone.
charm.) But forging relationships can be new prescriber. I always try to bring some- Appointments you enter will automat-
tricky, even with good physician. Here are one with me to take notes when we go for ically sync to your calendar.
some things I’ve learned that have the important visits too. Make sure you www.mymedicalapp.com
enabled me to be more involved in Ava’s both understand what the physician is
healthcare. saying, as medical jargon can be really SPRING SUMMER 2016 29
confusing even if you’re familiar with it!
1. The patient-physician relationship is
based on communication and respect. A 4. Know the best way to contact each
good doctor will respect your daughter prescriber. I was a little shocked when
and respect that you know her (and often another Rett mom mentioned emailing
Rett Syndrome in general) much better her daughter’s doctor and h-earing back
than they do, and should rely on your right away. But our Rett specialist does the
communication extensively since our girls same thing! Who knew? We are super
aren’t vocal. On the ﬂip side, we owe these thankful to have someone so responsive
physicians our respect as well, so we helping our girl. There may be multiple
should be quick to listen and slow to take phone lines and places to leave voice-
out our frustrations on them.
mails, so knowing how to reach a live person is huge in an emergen-
cy. When problems arise, know who will handle them most eﬃcient-
ly. Sometimes this is the doctor himself, so you may have to insist on
seeing him. But it could also be a nurse who takes the time to explain
things well! This comes with time, but it doesn’t hurt to make note of
who actually resolved the issue or called you back promptly so you
can ask for them in the future.
5. Be friend your local pharmacist! Besides general counseling and
screening for drug interactions, they can help you pick out vitamins,
order medical supplies or formula, recommend how to give meds
via feeding tube, or order a speciﬁc brand of seizure medicine that
works well for your girl. Let
Personal them know about her
Records diagnosis and ask them to
PHRs are another way of keeping watch for any drugs that can
track of your Rett Girl's medical
records. They can be compatible prolong the QT interval. And oorgttFhianeonryrizusiedrplee.macceosiadmolicn/paja7hl rogcewhunartrbstfs: .
with some medical devices and don’t hesitate to ask for
pharmacies or hospitals. If your advice if a prescription is
hospital or physician is set up to really expensive- often the
use these, they can send results of medicine can be substitut-
tests or visits straight to your PHR. ed with something cheaper,
These may be accessed by people or there may be assistance
other than you though, so be sure
programs or discount cards
you can use with or without insurance to lower the price. Just as with physicians, if a pharmacist
doesn’t have time to talk to you or hear your questions- please ﬁnd a new one! There are plenty
who do, and you’d be surprised at what an asset they could be for your daughter.
to research the PHR product you
will be using. You’ll want to make Wishing you all a wonderful year of healthy and helpful relationships with the prescribers
sure privacy options are appropri- taking care of your girls! We can accomplish so much more for them as part of a strong team.
ate and that the companies can’t
sell your information. A good
description of the PHR can be alvtioaiwnhayyssouWyuraaorl.unlcgsortmaoempaepr/rnehtstfthpiclah7tomqneyed!ys
found at tinyurl.com/zpacgrh, and
the myphr.com has links to many
30 SPRING SUMMER 2016
THERE'S A LOT HAPPENING AT GIRL POWER 2 CURE! CHECK OUT SOME
OF THE HIGHLIGHTS ON THE NEXT FEW PAGES TO FIND OUT WHAT IS
HAPPENING THIS SPRING AND SUMMER!
SPRING SUMMER 2016 31
Tfrhoamt’sabdeecbaiulisteatSinagranheiusroonloegoicfatlhdeisthoorduesrancadlsleodf girls suﬀering
itsthc?ereirakmids.gWoht asttIuwwcaoksuinlhdeStsahirteaahno'ttshtcoelora.sksSid?asrWaahonumdldtohvteheiser cptoeaanrecshtnaetnsrttblhyei,npakbu?ltesHthooewrhwahnaodnudlledsiittnh?ehWyeortrumeladotuShtaherra, ?shwWbaeotusa,lbdpluethltlesoyhhbaaienrdmalneadd
The questions just kept coming.
TkhBhiiudtettsyionwwnge,atrahnenatddet rdﬁlaertwtsottnihndtegaolypoS, uaIhtrjeuaarhs. fteisnwmssuilccerhde.aaAmpLsoLstthihteievmeksiwdeslavywe. seT.rhTeehmyiswowvaiannstgekcdinotdnoesttraaglnaktrlttyoe,nhpeaufrt.tteTinrhgaelytlh.weEiarvnehtnaendmdtosoriesniittnhnseepixirrtimtnoog,uhttehhre.s,
32 SPRING SUMMER 2016
PLANT FLOWERS FOR A CURE
Garden of hope
Grow a garden to raise awareness & research funds
for rett syndrome
What a better way to raise awareness than to HOST a Garden of Hope. FiAnrdetGtogauatrrdmdeeonnreooffahbHoopouept.eorg
You've seen shamrocks, sneakers and hot air balloons that you sign in
exchange for a $1 donation...we have paper FLOWERS!
Together these ﬂowers create a "Garden of Hope." Each garden not
only grows hope for Rett Syndrome, but awareness and funds. Start
one this month and watch how fast your garden GROWS HOPE for RETT
BE A GARDEN SPONSOR HOST A GARDEN PLANT A GARDEN
We need sponsors to help our We need hosts to help our We need volunteers to help
gardens of hope grow! gardens of hope grow! our gardens of hope grow!
YOUR DONATION WILL: HOSTS CAN BE: PLANTERS CAN BE:
• Help us to promote the • A business • A Rett family
• A bank • A girls' club
program worldwide. • A store • A ladies' group
• Help us print, ship and track • An event • An volunteer organization
• Anywhere ﬂowers of hope • Anyone interested in
our Gardens of Hope. can blossom!
• Help us turn every Garden of planting hope!
You can order a Garden kit to
Hope planted into $200 for plant yourself, or you can HOW IT WORKS:
research! get volunteers involved to • SIGN UP for an account .
"cultivate" the garden with you! • We mail you A FREE KIT.
• GROUND BREAKER - $10,000 • You reach out into your
• WILDFLOWER - $5,000 RETTGARDENOFHOPE.ORG
• MORNING GLORY - $2,500 community & ﬁnd HOSTS.
• DAFFODIL - $1,000 • Customers donate $1 for
• SWEET PEA - $500
• SPROUT - $100 each ﬂower.
• SEEDLING - $20 • You keep us posted on how
RETTGARDENOFHOPE.ORG your Gardens are growing!
• Collect the donations and
We Gsuaprpdoernt oRfSHRopTe wfuitnhdso!ur
mail them in.
SPRING SUMMER 2016 33
Making a difference in the world of Rett Syndrome and beyond
Somewhere in Dallas Texas stop there, she decided that she
there’s a 4th grader making a would do something annually.
diﬀerence in the lives of girls This year not only did she grow
with Rett Syndrome and making a Garden of Hope at Peter Piper
this world a better place. Pizza but she expanded it and
Fernanda may look like your grew one in her school as well.
typical 11 year old, She plays
soccer, is part of the running club Fernanda’s story reminds us
and enjoys hanging out with her that there is inspiration all
friends But It just so happens that around us. We need to look no
Fernanda has a few friends that farther than our friends! Since
suﬀer from Rett Syndrome. her ﬁrst fundraiser Fernanda
has met other girls with Rett
Last year Fernanda attended a Syndrome, Courtney, Kelsiana
golf outing for her friend Juliana. and most recently Annie. Her
This inspired her to do passion is only growing and her
something on her own. She inspiration is catching on. A
decided on an Art Auction held at friend who had helped her with
her local pizza parlor, Peter her Garden of Hope decided to
Pipers Pizza. She even rallied her start his own fundraiser for the
friends in her afterschool American Cancer Society in
program, Club 21, to help her. honor of his Grandfather.
They ended up raising over He had supported Fernanda’s
$900! Wow! Not bad for her ﬁrst
fundraiser. But Fernanda didn’t
event, she in turn supported his something with passion for the
event and who knows who was right reasons and people take
inspired from there. What a notice. No matter what your age
wonderful chain of events! you can be an inspiration and a
role model for others!
The moral of this story is that
inspiration is contagious! Do
34 SPRING SUMMER 2016
SPRING SUMMER 2016 35
36 SPRING SUMMER 2016
rettgi rl orgTHE EVERYTHING RETT SITE
WHO ARE WE SUBSCRIBE!
Getting a Rett Syndrome diagnosis will change your life forever, no Subscribe to the guide!!!
question about it. There is a loss and a mourning that takes place for Subscribe to our Rett Girl Magazine and be the FIRST to
the way you thought life would be. But as education, technology and receive our online version jam packed with the best tips,
research surges forward our hope of freeing our children from Rett products, recipes, activities and some p retty gr eat articles!!!
Syndrome gets stronger and stronger. We know we have one goal – PLUS be the FIRST to know about special coupon codes
to make our Rett Girls as strong and healthy as they can be until we on products from our partnering companies AND our
have our cure! This is where RettGirl.org steps in! monthly FREE Giveaways!! Subscribe at www.rettgirl.org.
RettGirl.org is the “everything Rett“ site! We relentlessly search for HELP WANTED
products, tips, resources, services - anything and everything that
makes life with Rett Syndrome just a little bit easier! Looking for Do you have a blog? Are you a writer? Do you have a passion
shoes that ﬁt AFO’s? We’ve checked them out for you! Looking for for helping other Rett parents? If so we’d LOVE to hear from
a high calorie gluten-free snack? We have several! IEP help? Yep! you!! We’re looking for writers who want to showcase their
You’ll ﬁnd it on RettGirl.org. How about information about eye gaze talent while helping other Rett families. Contact Bridget at
computers? We’ve got that too! Head on over to RettGirl.org and [email protected] for information about writing for our
use the search bar to ﬁnd what you’re looking for! Rett Girl Magazine!
In addition we have lists of doctors familiar with Rett Syndrome,
conference and webinar information, and lists of Rett Syndrome
fundraisers happening around the country. We also have resources
listed that can help with funding, research papers written by Rett
specialists and so much more!
CONTACT US! • SOCIAL MEDIA: ADVERTISEWITH US
• WEBSITE: pinterest.com/rettgirl Hit your target market and make an impact in the lives of
@rettgirl our Rett Girls! Help Sponsor our Rett Girl Magazine by
www.rettgirl.org advertising with us! For more information and to see
our Ad Specs contact Bridget at [email protected]
SPRING SUMMER 2016 37
R U N T O R A I S E AWA R E N E S S & F U N D S
join us and help us run miles for a cure!
Team GP2C is committed to providing an opportunity for racers to be able to raise awareness and funds for
Rett Syndrome research as well as support for girls and their families aﬀected.
REGISTER for OUR
Power the Flower 5K - Jacksonville, FL
Racing for Rett - Harrisonville, MO
Registration opens for Disney Princess 2017 (2/24-26)
Disneyland Superheroes Race Weekend, Anaheim, CA
REGISTER TO RACE ANYWHERE!
Team GP2C oﬀers the opportunity for you to spread awareness and raise money for Girl Power 2 Cure by
running the race of your choice anywhere you choose! For more info visit: girlpower2cure/teamgp2c
Select from two OPTIONS:
O P T ION 1 #PowerTheFlower with a Team GP2C race shirt, Team GP2C medal and some other items to help spread
awareness on race day.
O P T ION 2 Take advantage of our incentive plan where you
could earn a reimbursement of over $600 to cover your
race entry fee, travel and hotel expenses.
Click here for all the details and to register to join Team
GP2C and start spreading awareness and raising funds
38 SPRING SUMMER 2016
Stepping Stones for Stella, a 501(c)(3) nonproÞt Organization whose mission is to provide
children with disabilities the freedom to access the great outdoors through the use of our
Please visit us at www.SteppingStonesforStellaS.oPrgRfoIrNmGoreSinUfoMrmMatEioRn. 2 0 1 6 3 9
Wfteaehdmeuericdaliaueptcsiosa,rttsse & Wfsaeumpoipflyofertr tWhee icnosmpmiruenity frWiensedefaaurnccduhrteo
RETT GIRL SPRING / SUMMER MAGAZINE © COPYRIGHT 2016. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED
40 SPRING SUMMER 2016