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Prader Willi Syndrome

Prader Willi Syndrome, Q & A Series

The Manifestation Q&A Series. Rachel Pastiloff: Writer, Yogi & SuperMom.

July 20, 2012

Welcome to The Manifestation Q&A Series.

I am Jennifer Pastiloff and this series is designed to introduce the world to someone I find incredible. Someone who is manifesting their dreams on a daily basis.

Ok, maybe I am a bit biased because Rachel Pastiloff is my sister but she is the coolest person I know. She is an amazing mom, yogi and writer. In fact, she writes my favorite blog called 3 Words For 365. She is also the founder of the Facebook page I Am A Fan of Somebody with Prader Willi Syndrome (my nephew has Prader Willi Syndrome.)

Below find her inspiring Q&A where she talks about being a mom of a child with special needs, quitting smoking and becoming a yoga teacher among other fabulous gems.

I am so proud of my sister, who also happens to be my closest friend. I have invited her to assist me at my Manifestation Ojai Retreat Oct 19-21 in Ojai, which is almost sold out. Click here is you want to sign up. She will also be assisting me at Kriplau at my weekend program there Feb 1-3, 2013. (Email me to sign up for Kripalu weekend in the Berkshire of Massachusetts.)

Get ready Atlanta, because Rachel will be taking Manifestation Yoga to new heights. 

Put down whatever you are doing and read about her inspiring journey and her love of meditating, pizza and her boys.

My sister Rachel and I with our beloved Steve Bridges who passed away shortly after my Mexico retreat. This was taken in Mexico at my retreat.

Jennifer Pastiloff: What are you most proud to have manifested in your life?

Rachel Pastiloff: I am proud of manifesting my children. They are my greatest gift in life. They are my teachers, my best friends, and the most honest people I know in this world. They give my life purpose and a reason to wake up and smile at the sun everyday. I am proud to have manifested amazing relationships in my life with my family and new and old friends. I am blessed to have the most amazing relationship with my mentor, the incredible Jennifer Pastiloff, the one who inspired me to Yoga Teacher Training, and to start writing my blog. I feel blessed to have people who believe in me.

Jennifer Pastiloff: What is the greatest lesson you have learned this past year about yourself?

Rachel Pastiloff: That is really an interesting question. I have learned so many lessons about myself this last year. I have learned that I am lovable and worthy of being loved in the truest form.  I have learned not to have expectations. I think the most important lesson I learned this year was how to communicate with people in an authentic nature. We take communication for granted. We hide behind our emails and texts and forget what it feels like to be part of a community. The greatest lesson I learned was to have courage to live with my heart, that helps me communicate much more effectively with not only my children and husband, but my community at large.

Jennifer Pastiloff: What is the greatest lesson you have learned from your boys?

Rachel Pastiloff: The greatest lesson I learned from my boys is to wave your Freak Flag high. We all are different. We all love differently, learn differenlty, look differently, but inside we all want the same thing. TO BE LOVED. My children are such resilliant little creatures full of wonder and they are oblivious to much of the discrimination that fills our world. I get strength from them to realize it is ok to be different, in fact I am rather fond of being “Not Normal” it fits me and my personality just fine.

Jennifer Pastiloff: From having a child with Special Needs?

Rachel Pastiloff: Having a child with special needs is a challenge, but one that I happily face everyday. I have always been what I considered a strong person, but this challenge took me to new heights. I have learned how to have real compassion, real strength, and unconditional acceptance. There are days that go by with no problems, not most, but some.  Then there are days where I feel like I am drowning. All these days offer me the gift to grow and learn and keep building compassion in my life. As the parent of a special needs child I see all the things he does as miracles, things that many parents of “typical” children take for granted. I celebrate all the moments, be they big victories, or just small baby steps. I am filled with pride for all that my child accomplishes everyday. He is definitely not a quitter, and it pushes me on to higher mountains with him everyday.

Blaise, who has PWS, rocking out! He loves music.

Jennifer Pastiloff: Can you tell us about Prader Willi Syndrome? I think most people do not know what it is.

Rachel Pastiloff: Prader-Willi Syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as the most common genetic cause of life-threatening childhood obesity. The symptoms of Prader-Willi Syndrome are thought to be caused by dysfunction of a portion of the brain called the hypothalamus. The hypothalamus is a small endocrine organ at the base of the brain that plays a crucial role in many bodily functions, including hunger and satiety, temperature and pain regulation, sleep-wake balance, fluid balance, emotions, and fertility. Although hypothalamic dysfunction is believed to lead to the symptoms of PWS, it is not yet clear how the genetic abnormality causes hypothalamic dysfunction.

Basically, to sum it up it can be said that it is a syndrome of STARVATION. To learn more please visit www.fpwr.org.

Jennifer Pastiloff: What is your vision of yourself in 1 years time?

Rachel Pastiloff: In one year from now I will be teaching yoga full time. I will have my meditation practice down to a definite everyday not matter what. I will have surrounded myself with amazing people and infinite possibilities. I plan on traveling with my sis Jennifer as much as possible. Doing yoga as much as possible, oh and let’s not forget that I will be writing a book. I hope to have my book out in 2014. If you need inspiration I got plenty to go around.

Jennifer Pastiloff: What has been the toughest decision you have ever made?

Rachel Pastiloff: The toughest decision I ever made choosing to live a life of sobriety and health, simultaneously I moved to the other side of the country from my family, the people I am more in love with then anyone. It was the toughest and the sweetest thing I ever did for myself and my body. I am such a blessed person now to have seen the other side of a the “dark knight” that we all have at least one of in our lives. I am 34 years old now and loving every minute of my life.

Jennifer Pastiloff: Who/what inspires you the most?

Rachel Pastiloff: I am inspired when I see people being kind to my son, not because they have too, but because they want to . I was inspired the other day as I watched a car drive by and offer an umbrella to her mom and baby in the rain. I am inspired when my family and friends live their dreams and happiness in their lives. I inspired by real love and real friendships. I am inspired by myself and who I am today, as I look back on who I was 7 years ago. It is pretty damn close to a miracle.

Jennifer Pastiloff: What do you think your Dharma or you’re your calling is?

Rachel Pastiloff: I believe that my calling is to work with people. I can’t say that it is limited to yoga, but I am here to connect people. I think I am here to inspire people to live their fullest potential. It may be that it happens through my book, my blog, my yoga teaching, or my energy work that I plan on studying soon. I feel as sense of onenes with the world and that is “Where I live!”

Jennifer Pastiloff: What was your “aha” moment that this was what you were meant to do with your life?

Rachel Pastiloff: At the hospital recently with my father in law. He was in severe pain and I just put my hands on his legs. He asked me what I was doing? My reply was energy work. I was focused on sending all the light inside of me to his legs where the pain was. He told me that he felt it very strongly and that it was working. I knew right then that there is a light in me that burns bright, and I am just on the verge of recognizing it.

Jennifer Pastiloff: Who has been your greatest teacher?

Rachel Pastiloff: Oh such an easy one to answer. You, my dear sister have been my greatest teacher. I am so overwhelmed at your dedication to me, your faith in me, and your constant hand that is always there to hold. It has without a doubt brought me to the place I am today.

Jennifer Pastiloff: I love how after my Mexico Retreat, you came home and decided to quit smoking and sign up for a yoga teacher training in Atlanta. Tell us about that.

Rachel Pastiloff: WOW….I came back from Mexico, but not as me; as somebody else. I left the old me back in Xinalani. I realized that smoking did not serve me anymore and with no help at all, I put those smokes down and never looked back and that was over 4 months ago. As nervous as I was to start teacher training it was the ultimate gift I ever gave myself. I am a new woman. One who loves her self. Takes care of herself and, oh yeah can do a handstand. Oh yeah baby!

Jennifer Pastiloff: What would a snapshot of Rachel Pastiloff’s day look like?

Rachel Pastiloff: Are you sure you want an answer to that? Ha.

Today I have been up since 4:30 with Maddock, and he never napped. I spend all day running around trying to keep the children active and happy and away from food as much as possible. I usually don’t ever get a minute to sit down, and yes there are days where I just feel that I have been given more than I can handle, but those days are rare. Every day is a new day, a fresh start. Life is hard having a child with PWS and Autism and another child with a mood disorder and severe ADHD. As long as I am meditating I can stay calm through the storm. It has saved my life, literally.

Jennifer Pastiloff: I remember 3 years ago when Blaise was diagnosed with Prader Willi Syndrome like it was yesterday. What would you say to someone who just found out their child has PWS?

Rachel Pastiloff: Don’t panic, all will be OK. It is the scariest diagnosis to receive but our kids are amazing. My son has accomplished all and more than I ever could have imagined. My heart hurts that he feels hunger, but that will be gone one day as we find a cure. Reach out the PWS community. We are large and strong and a definite family. You will never feel alone. Our kids are unstoppable and capable of climbing the highest mountains with the right guidance.

Jennifer Pastiloff: What would you say to your 16 year old self?

Rachel Pastiloff: I would definitely say to myself that boys are just not that important and to focus more on what matters to me. HA HA. I think really what I would say is have confidence in yourself. Find what fulfills you and fill your heart with love. The most important thing I would tell young me is that you can’t ever fill the void in your heart from the outside in. All good starts within you and doesn’t’ come form the validation of others.

Jennifer Pastiloff: Gratitude is the greatest force In my life. Most of my classes are set to this theme. If you could say thank you right now, who would it be to?

Rachel Pastiloff: I would say thank you to my mom and dad. Although my dad has been gone for almost 35 years he gave me life, and big blue eyes, so thank you. Thank you to my mom for teaching me how to be a woman who can do anything on her own. Thank you to my step-dad Jack, the man who has been with me through my teenage and adult years. The man who is always there if I need him, the man I feel true strength and comfort with. Thank you to my sister for being the the push that I needed in life.

Jennifer Pastiloff: What fulfills you?

Rachel Pastiloff: A good meal fulfills me, especially a good pizza. No, OK. I am fulfilled when I am fully self expressed, and when I am not looking outwardly for confirmation of who I am. When others see me as a calm and together person I feel so fulfilled.

Jennifer Pastiloff: I know these past few years have been really hard for you. What has been the silver lining to come out of those years?

Rachel Pastiloff: Yes, the last few years have been really tough. The silver lining is easy. I live everyday as a new day. I never ever think of myself as broke and I always believe that things can work themselves out. This keeps me going everyday of my life.

Jennifer Pastiloff: What are some words you live by?

Rachel Pastiloff: Words to live by are:

Integrity,

Faith,

Love,

 Kindness.

Jennifer Pastiloff: How do you stay connected to your own bliss and sense of self while dealing with 2 children, one of whom has Special Needs. I know you spend almost every day at a doctor or therapy appointment.

Rachel Pastiloff: I stay connected with my bliss by meditating. I take those few minutes to myself and it is truly blissful. I also take time for myself before where that was a fantasy in the past. I live bliss now, even when I can’t get my private time, I make time for me to write, or read, or meditate, or rest. My body shall be neglected no more.

Jennifer Pastiloff: What are your favorite 3 memories?

Rachel Pastiloff: Driving cross county with you and mom is one of them. The other two are easy. The day Blaise was born and the day Maddock was born. My life changed forever. I am happy to say for the better.

Jennifer Pastiloff: Can you share with us about your yoga/meditation practice?

Rachel Pastiloff: I meditate every day for 15 minutes twice a day and that is what keeps me sane. I take as many yoga classes as I can in a week. When I am home with the kids I start doing yoga in the house all around their chaos. If they are playing I will do a bridge pose and they can play under me. You do what you can. You get creative when you are a mom.

Jennifer Pastiloff: What’s up next for Rachel Pastiloff?

Rachel Pastiloff: Opening my own yoga studio. Traveling as much as possible. Reading at least one book a week, and studying energy healing. I think that is as much as I can fit into my day as possible. 😉

Blaise and Maddock having the giggles.

Rachel and Blaise

Rachel and Maddock when he was a baby

Connect with Rachel on Facebook here. 

Connect with Rachel on Twitter @manifestingmom

Follow her awesome blog 3WordsFor365

Rachel’s family.

 

Maddock chilling out!

Taken in Mexico at the life-changing retreat

taken in Mexico!

Prader Willi Syndrome

What Do You Do When You Buy 2 Nights at a 5 Star Hotel in Paris By Accident?

May 1, 2012

What do you do?

Have Faith.

You gotta have it.

So says George, at least.

On Saturday I went to a gala for Prader Willi Angels. My nephew has Prader Willi Syndrome, a rare genetic disorder and I pretty much love him more than anyone on the planet, so I thought I would go.

My awesome nephew and buddy Blaise who has Prader Willi Syndrome

Tickets were $150 and all money raised would go toward research. 

I was down.

Plus, I had never been to a proper gala so I was excited.

I’d get to change out of my Lululemon gear? Sweet!

So I get kind of dressed up.

My friend decides to join which I think is amazing because it is $150 after all and that’s not chump change for most. I pick her up and we look super cute together except for the fact that she is about 6 feet tall and I am closer to 5 feet so I look like a Smurf. Otherwise, totally cute. It’s even being at the Jonathan Beach Club in Santa Monica.

Swanky.

My awesome friend Elizabeth aka Cherry who came out to support Prader Willi

First mistake: I get a vodka and soda with my drink ticket. (Yes, I teach yoga. So?)

I should have known when the bartender says, ” Heavy on the vodka? Easy on the soda?”

I thought she was kidding.

She was not kidding.

So, it’s my first gala and all and I don’t really know what the proper etiquette for a gala is  (I mean, what is a gala anyway?) I start looking at the stuff being bid for the silent auction. With my vodka soda in tow.

I ask ” All the money goes towards research, right?”

Answer: Yes.

Second Mistake: I put my sticker 395 down under $30 for a Brazilian blowout in Sherman Oaks which I will probably never use because the valley is like going to New York when you live in Santa Monica.

But hey. It’s for charity.

(Yes, I won it.)

Then I see it: French Kiss it says. Luringly. (This is really the 2nd Mistake but by putting my sticker down on the first thing I got myself in trouble. Downhill from that there Brazilian blowout in the Valley.)

What’s this? I ask as I sip my drink.

Well, well, well.

It’s a 5 star (yes, 5 star) hotel in Paris.

Le Bristol.

A 2 night stay worth $3,500 dollars. (My eyes caught fire when I read that.)

So I took another sip to cool down.

I was going to be in Paris in July after my Italy yoga retreat! Ding ding ding.

3rd Mistake: Yes. I did it. I put my sticker down. Number 395. Lucky Number 395, that is.

A woman was lurking. She wanted the Paris hotel too.

It made me want it more.

(Side note: they had swiped my emergency American Express card when I walked in just in case I bid on anything and won.)

I wanted it now more because this woman wanted it. (I’m telling you, I really am quite yogic. I am not sure what got into me.)

Oh yea, a vodka soda and a little healthy competition.

4th Mistake: She walked away and I put my sticker down. Again.

The auction ended.

Yes, dear reader, you guessed it.

I won.

Ok Jen, I told myself (out loud) You may not have this money. This may be on a card your husband got you for an emergency but it all goes to research and it’s worth $3,500 so really you got quite a deal at $1,560 dollars for 2 nights in Paris. I mean, it’s a steal. It’s like for free!

Jokes aside, I panicked a bit. I really did not have that money to spend but I knew it all went to charity so I just breathed. Loud and hard. But I breathed.

I took a picture of the gift certificate I won to show the Peanut Gallery (aka my husband and mom.)

5th mistake: I take a picture of said certificate and leave it at the flipping Jonathan Club.

I get home and I realize it is gone so I put on flip flops and drive back and march back in and dig in trash cans.

Nope. Nothing.

(You have to just pause and laugh here because it is too funny.)

I immediately email the hotel ( I had taken a picture of the certificate so I knew the email) and I cc’d the girl who ran the gala. I would have to be able to get a new certificate.

Right? Somebody please tell me Right!

So here is where faith enters:

It is okay that I spent that kind of money. My first instinct after I did it was to say “Who am I to spend that kind of money? I am just Jen.”

Screw that tape! I am Jen! I am Jen and I deserve this.

Also, the money will come back to me. It always does. Always.

I also have faith that this ridiculous amount of money I spent for 2 nights at a hotel will help find a cure for my best buddy Blaise.

I also have faith that it will all be worked out and they will be able to easily get me a new certificate so I can indeed book those ridiculously expensive two nights.

I have a vision and I hold it in my heart.

This vision is:

Me hanging out at this Parisian hotel and writing my book. 

My nephew and all the other PWS angels never having a hunger pang again.

Money never ever ever being an issue for me.

I have faith in these visions.

In the meantime, check out this hotel. And keep me away from galas, vodka, silent auctions and Brazilian blowouts.

Just a bit of info on PWS: Prader-Willi syndrome (PWS) is a genetic disorder that occurs in approximately one out of every 15,000 births. PWS affects males and females with equal frequency and affects all races and ethnicities. PWS is recognized as a common genetic cause of childhood obesity.

PWS was first described by Swiss doctors Andrea Prader, Alexis Labhart and Heinrich Willi in 1956 based on the clinical characteristics of nine children they had examined. The common characteristics defined in the initial report included small hands and feet, abnormal growth and body composition (small stature, very low lean body mass and early onset childhood obesity), hypotonia at birth, insatiable hunger, extreme obesity and intellectual disability.

Please please please vote daily on this video to help get PWS to the White House so we can eliminate these challenges once and for all.
Here it is.
It will make all the difference in the world.

Renay Compere, far left, owns Pop Physique in Santa Monica where I host my workshops and has a son with PWS

Guest Posts, Prader Willi Syndrome

Welcome to Holland

January 10, 2012

Welcome to Holland. Truly a post reading and sharing, Manifesters! A brilliant essay by Rachel Pastiloff on love and acceptance. BRILLIANT!

don’t listen to what anybody tells you that your child is capable of doing. What do they know. Children have spirits that are unmatched by anything I have ever seen in this world. Children can move mountains with their will and determination. I have been blessed to have an amazing doctor for Blaise who always tells me that he has and will continue to have a great life. ” Click here to read more.

Birthday, Prader Willi Syndrome

My Birthday Request.

December 12, 2011

Dear Manifesters,

It is my birthday today and I can safely say it is the best birthday I have ever had! What would complete it is if you supported PWS research and bought a Manifestation shirt or bracelet!

My latest TinyBuddha piece got published today, of all days! Here it is.

It is called “The Future is Completely Open” and along with GMA, it is an incredible way to celebrate my birthday! (http://tinybuddha.com/blog/the-future-is-completely-open/)

Click this icon to read my birthday post on TinyBuddha.

I had Good Morning America on my vision board and yesterday we filmed my segment at Equinox South Bay during my karaoke yoga class. My interview is later today. Yes, I visualized it and it happened.

I acted AS IF.

 

A picture of my vision board that I made at my Manifestation Ojai retreat in September. See Good Morning America at bottom? (GMA)

It will air Dec 26th or 27th. I tell you as a reminder that you can manifest anything you put your attention on.

Deem yourself worthy to receive. (Took me a long time to get this one, folks. But I got it now. I am worthy!)

Thank you Wayne Dyer for teaching me that years ago! I look forward to teaching yoga at your conferences, my mentor!

All I want for my birthday is that you buy a Manifestation t-shirt or at least share the link. All money is going to charity for Prader Willi Syndrome, a rare genetic disorder my nephew has, and also to research for Tay Sachs (a fatal disease my friend Emily’s baby Ronan has.) Please consider buying or at the very least sharing and learning what these disorders/diseases are. I sent my first $500 check into the Foundation for Prader Willi Research last week and it felt so good.

You will notice on the Good Morning America segment that I am wearing a Manifestation tank and so is Cameron Mathison. Many of the class did as well and everyone wore their Manifestation bracelet. The bracelets are by donation, with a minimum of $3.

Here is link for bracelets.

Lego men manifest too! You can also get them from me in my public classes. Please post a picture of yourself wearing your bracelet declaring what you are manifestinh!

 

Here is link for tees and tanks. Please feel free to email me with questions and of course, we can ship them. Please specify if you want a tee or a tank in the message. http://www.jenniferpastiloff.com/PayPal.html 

 

My client and friend Alex Albrecht manifests with the gold shovel he got when he was on Jimmy Fallon a couple weeks ago. (Check out Alex's Voltron short that he manifested!)

Renowned yoga teacher Tamal Dodge manifests at The Yoga Collective in Santa Monica.

 

GMA correspondent and actor Cameron Mathison and I wear our Manifestation gear.

 

Thank you all for being a part of my life.

Keep manifesting your life,

one laugh at at time.

@manifestyogajen

ps, I am teaching a special birthday yoga class tonight at The Yoga Collective in Santa Monica. Feel free to join us at 8 pm. I will bring shirts and bracelets and a big hug for you.

Birthday, Delight, Prader Willi Syndrome

The Love of My Life Sings Me Happy Birthday.

December 12, 2011

Ok, ok, My hubby is also the love of my life but my nephew Blaise stole my heart when he was born. He has Prader Willi Syndrome. Please buy a Manifestation t-shirt by clicking here and support research.

My nephew Blaise and I at my wedding. Click on picture to buy a tee and support research for PWS

This video melted my heart. Enjoy. He is as sweet as they come. He gives the best hugs too.

Guest Posts, Inspiration, Prader Willi Syndrome

Warrior.

November 23, 2011

Please watch this video my sister Rachel Pastiloff Owings made today. PWS Warrior Mom.

Which indeed she is.

You will gain a better understanding of what Prader Willi Syndrome is and what my nephew Blaise goes through on a daily basis. You will also understand why I am raising money for research. Buy a Manifestation t-shirt® to help us if you are so inspired. Click here to order. All proceeds go to research. The money will be split between PWS research and Tay Sachs research which my friend Emily’s baby Ronan has. We will ship you the t-shirt is you cannot pick it up.

Please share this far and wide.

Also, please click on the “LIKE” button on Youtube as it will help us get more views. We want to educate the world. Knowledge is power.

What does it mean to own a Manifestation t-shirt®? Well, click here to find out!

Please learn more about Prader Willi Syndrome so we can come together and find a cure. Visit www.fpwr.org or pwsausa.com. My sister also has a “fan page” on Facebook called ” I am a Fan of Somebody with Prader Willi Syndrome.” Join today. Support!

My nephew and best buddy Blaise who has Prader Willi Syndrome aka PWS

Keep manifesting your life,

One laugh at a time,

Jen (@manifestyogajen on twitter)

ps, I started an organization last year called GAMEyoga.org which provides free yoga for kids with special needs. Email me for more info. GAME= Gifts And Miracles Everyday!