The words you are searching are inside this book. To get more targeted content, please make full-text search by clicking here.
Discover the best professional documents and content resources in AnyFlip Document Base.
Search
Published by Rett Girl, 2016-05-05 16:31:52

Rett Girl Magazine - Spring/Summer 2016

Rett Girl Magazine - Spring/Summer 2016

Spring
Summer
2016

PATIENT - PHYSICIAN RELATIONS

FEATURED GARDEN

YUMMY RECIPES! THE EVERYTHING RETT SITE

SUMMER READING

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
your family.
Happy Spring!
Bridget MacDonald
Rett Girl Coordinator
[email protected]

SPRING SUMMER 2016 3

Rett
GIRL

SPRING/
SUMMER
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

fabulous categories.

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

Rett
GIRL

Spring/
Summer
Activities

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 !

Mother’s Day

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

Father’s Day

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
the

6 SPRING SUMMER 2016

C e l e b r at e M o t h e r E a rt h

Earth Day-April22

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.

TalkChaebcokutoutitdhiTeetnuhbteniiefrNysda:sattitnioEhndndaauytlecluaaaGrrrteneiloo.ngmccraoooamlrpetminihpaig/c:bhtoBou2itrffdebjesnidrAd8osnp9.pthteo seeds!
help

F i r e w o r ks A lt e r n at i v e

Independence Day

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
market today!

fromlectosTloyhrfoisutuliGLFnraiayurnenuwdcrhoFlra.kiwnccaoeolsenmoeImns/dezaoltoi8grthuhLtesimgphau6tnsdSwhsho9oofwuandbsutton.

Head out the Door!

Community Outings

Join in the fun this summer

Spring has Minor League Baseball 4th of July
Sprung!
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
parades:
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:
store.usgs.gov/pass/access.html

You Can Do it!

DIY FUN!

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:

tinyurl.com/z9f3zp5

Hands-Free Card Holder

Get out a card game for those rainy spring days and let
your Rett Girl “hold” her own cards!

tinyurl.com/jnonyel

VISIT www.pinterest.com/rettgirl/diy FOR MORE PROJECTS!

10 SPRING SUMMER 2016

Rett
GIRL

Spring/
Summer
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!

Real Education.
Real Support.
Real Food.

Real Partnership.

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

RealFoodBlends.com/RettGirl

Warm Weather Meals

BLENDED FOODS

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
if needed.

“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.”
tinyurl.com/ztmsmqc

delivered right taotywohuorledsoaolre sptreicpe!sVisit gp2c.org/thrive

SPRING SUMMER 2016 13

Recipes

Gluten-Free Foods

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
blog: RETTGIRL.BLOGSPOT.COM/2013/05/GLUTEN-FREE.HTML

Peanut Butter Fruit Dip – From CookingClassy.com

Ingredients

• 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

MIN MIN

DIRECTIONS

• 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
FoodNetwork.com

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,

and diced
• 1 bunch Italian parsley leaves,

chopped
• 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

black pepper
• 4 heads endive, trimmed and

separated into individual spears
• 1 avocado diced, for garnish

DIRECTIONS

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
moisture.

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

Ingredients

• 1 lb skinless, boneless
chicken breasts

• 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+

MIN MIN

DIRECTIONS

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

Rett
GIRL

SUMMER
Break

THE HAPPIEST PEOPLE DON’T HAVE THE BEST OF EVERYTHING, THEY
MAKE THE BEST OF EVERYTHING.

SPRING SUMMER 2016 17

Join the Adventure

CAMP

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
www.tinyurl.com/j8yfykt
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
Community Center
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 !

CAMP Amica

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
SNACK CREATIONS
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
FiwnCdwawomu.gptpmA2ocmr.oeircgaa/baoamuttica
SPRING SUMMER 2016 19

Respite

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.
UK:
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
caretakers.

Therapy: therapists,
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.

Rett
GIRL

Spring/
Summer
Pro ducts

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
same time.
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!
rettgirl.org/2015/08/5723

ruffles built in to cover swim diapers and

come in sizes 6 months to 6 Toddler!

rettgirl.org/2016/02/6096

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!
rettgirl.org/2011/02/2271
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.
rettgirl.org/2015/06/5530

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

Rett
GIRL

Spring/
Summer
Educatio n

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

Summer Reading

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
a subscription.
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/

month.

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 !

RETT UNIVERSITY

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

Rett
GIRL

Spring/Summer

a h and Wellness

HEALTH IS THE GREATEST GIFT, CONTENTMENT THE GREATEST
WEALTH, FAITHFULNESS THE BEST RELATIONSHIP.
- BUDDAH

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
Health
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
different products.

30 SPRING SUMMER 2016

Rett
GIRL

Spring/
Summer
GP2C

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

Id"s'lraclehungogeuohvlltae.errT"rfhSsoecarrhgreaoehwtoltaa.hnsGedaibrnIlusosthtlthioekewrerfleS"idepasrluaaiphcnefdm"oirfdyoknsri'tnttohdumeesumargca.ahllryttehcneomafitresottuodrathyims y

Tfrhoamt’sabdeecbaiulisteatSinagranheiusroonloegoicfatlhdeisthoorduesrancadlsleodf girls suffering
Rett Syndrome.
CbhDinoeaesnensidnddpeseirt.moeaTbnhabbeeloeldyddotdyfooettfhaphtneaehstneeejdinurstosaeitrnbtewbiollaoititcfhnyeke'ttstrio,wsmSsfoaeoprrrokeaefhafvoksiet,rsrwrhu"yiaegnplrgk.atl,herctesr,oraetfwh"telh-,seoterirargupdisrpaeleyst.dhhaevire

ThiIneatysekhgeredastitethadenitanldytomaaginrreiesegtdrua.ltaorrcslaaststrhoeosmchwoiothl itfhSearreashtcoofuhlderbpeeers.
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,
GebwIssIninehataroewallptrlrdPhsaigSeoernioastwesefir,escaevpauthgeruolkir2asbrihrlhrneCs,eedaIhua-lemnplertlreohryigrntiawwapisgicrhasawetfeiseedrdhnoebaotmlmwochclerlhuaaanhtarcgs.aehiiservtnr,naiowewnetostagirsempasnnaet,tietnhohiIwdoenewnfirfgoirtntinfirnoedolpesntsoashdeiwsnec,seup.etpdhrriIhcefersukreafaclaou,wsllarnpeGsuhRt“sireehGrrtrtoleuitPcorrtSlliomhanyPwisgnonwsedwggmrhrsieorioansrlmts”hweae-ebsec.tetdrbhiefreoaooaentrpmes.wpp.IioeBeknudncugli.etdafworOlulonyvismnetenhrtubtahthrehtateiuefitnirrrigninsntetasagxtbdl;aetlanenswytet,tasvtownheahitarntieathndlliigptncw.trwteoehoeareukteilsavd,deI

sscBsUFukouuanermptsfittbvpgcmefohoroouraersrwtnrdwi,dtiirtyo,aney.aurgs.dCrodWdofl1uaoeudr0oecntwsweyhtleesnreeiraaoasvrosnrtesindm.hnoGogheneiuedaartrrlunhstPncuedaoaotniltuwtsiidettoeatablncrtneooaa2coiluimrkCntnar,ugatacalgreieoenbe.suisrsinrsostigtnnhehtsoaleovptwreiocrssaovaptfmetoritrooehr5mtneio0anuhol0grepuRalwermeflogatproytoalwffoesatsefmawrraonioslodstiiaetisgcsdstkieadraelnrinsrtdwidoaohirnntnehoathebilhimiserraehaststieoneaudmrtcsheews:ogRrreoldtwtwtGihdirtelo.apnrdovRiedtet
TjgeItcoAohrvsoulogteelnraewrendsryttffteohihetpyoieidloearrat,trnnmonsesdsodmysj.onfltWsjpaiootn–oreruwtniiwnvrvooengeeawurerlwttpueyoiaodeniatsmwhtaltolhheanianteekrdnt.eelwtWeb,eeaphrnnseaooptesvwiwloereeoesdae.fijllrfitoktilinheuevsgolesridnsdsudeesoaaiaynffnfbnddfl–eydrowgassewfrinh–droeaceewwrietdshwhwe.teoiaohtTrchhehtjhuaaraeekssanatenctckphohdoyeenvofereteaevurkmrieibatanroiruylgehytedieosoaladluucnsypthit.dtopahaebooen.oriudtrvirvee

FInogurniddeHraarnddinPgresident

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
SYNDROME!

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.

RETTGARDENOFHOPE.ORG

SPRING SUMMER 2016 33

Inspiration

Meet Fernanda!

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
fb.com/rettgirl
• 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]
• SHARE!
rettgirl.org/submit

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

TEAM GP2C

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
UPCOMING RACES:
AT WWW.GP2C.ORG/TEAMGP2C

May 14

Power the Flower 5K - Jacksonville, FL

June 4

Racing for Rett - Harrisonville, MO

July 12

Registration opens for Disney Princess 2017 (2/24-26)

NOVEMBER 11-13

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.

Join US!

Click here for all the details and to register to join Team
GP2C and start spreading awareness and raising funds
today!

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
buggies.

Please visit us at www.SteppingStonesforStellaS.oPrgRfoIrNmGoreSinUfoMrmMatEioRn. 2 0 1 6 3 9

WWW.RETTGIRL.ORG/GUIDE

& aawRnaudnrehwneeliptshsuTsfoerraamRiseeGttpf2sucnydnsdrome

Wfteaehdmeuericdaliaueptcsiosa,rttsse & Wfsaeumpoipflyofertr tWhee icnosmpmiruenity frWiensedefaaurnccduhrteo

Wawe acrreeanteess

RETT

UNIVERSITY

RETT GIRL SPRING / SUMMER MAGAZINE © COPYRIGHT 2016. WWW.RETTGIRL.ORG | WWW.GP2C.ORG ALL RIGHTS RESERVED

40 SPRING SUMMER 2016


Click to View FlipBook Version