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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, 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!

Guest Posts, Inspiration

Compassion. Guest Post by Rachel P.

November 11, 2011

The following is a guest post by this girl named Rachel Pastiloff. Oh yea, she happens to be my sister. She is the mom of the little boy who prompted me to start GAMEYoga.org: Gifts And Miracles Everyday. Free Yoga For Kids With Special Needs.

COMPASSION

(by Rachel Pastiloff)

I have had the concept of compassionon my mind a lot lately and how important I believe it is to have it.We live in a crazy world. For so many of us these times are tough times. I know people right now who have lost their home, lost their jobs, have a child who is dying, have a marriage that is failing, are diagnosed with breast cancer. The list goes on, sadly. My God, it can be overwhelming.

I think to myself everyday:I must have compassion, I must have empathy.
Why do I do this? I do this because all of these people deserve it. I believe everybody deserves compassion. I do it sometimes even for those that we think are unworthy. Again, some of you may ask why?
Here is the nitty gritty of it all. I want others to have compassion for me and compassion for my son.If you want to see change, then you have to be the change!

I was recently told a story by a friend of mine about his little brother who has Aspergers’ Syndrome. Everyday when his little brother goes to school the kids say to him, “What’s up Forrest Gump,” “Hey Forrest Gump,” and then the other slurs begin. I cried when I heard this.

How could this be in 2011 that our children could have such little empathy and compassion for each other?
THEY LEARNED IT AT HOME.
We have got to start teaching our children young about how to feel for others, how to care for others, and how to really see people for who they are and not what they “can” and “cannot do”.
As the mother of a child who has special needs, I am continually baffled by the lack of compassion in the world. Often times, it is those who are closest to us who have the least amount of empathy for our situations. As the parent of a child with special needs I spend everyday just trying to get through the day. Let me repeat myself. I spend everyday just trying to get through the day.
It is tough when you have a child with special needs or any medical condition.Okay, so where am I going with all of this…what the true purpose of this entry, on my sister’s blog is…

What can you do?

Yes, you.Compassion and empathy can make such a difference in the life of a person with special needs or the parent of a child with special needs. When you are out at the store and you see a mom struggling, and you see the child in the midst of a crisis, PLEASE DON’T JUDGE! What you can do is: reach out.

HAVE COMPASSION.
Instead of mumbling to yourself, “Oh that kid is such a brat” why not walk by and just smile at the mother? Do you know how much it would me to her? Just smile at her, and without even saying anything, let her know that it is okay, that she is okay.I was recently at the airport with Blaise. We were waiting to board the plane and he was beginning his meltdown. He was really struggling and I was so tired and just exhausted from running to the gate to make the plane. I just couldn’t bring him out of the meltdown. Then all of a sudden an older couple in front of me turned to look at me. The woman must have read Blaise’s name on his backpack and so she started talking to him. Low and behold he stopped being upset. We started to board the plane and she turned again and smiled at me. I smiled back and thought to myself, “Thank you, thank you sweet stranger, thank you for reaching out!”

Such a small little gesture went such a long way.


How many of you out there have a friend with a child with special needs, or have a family member with special needs? I bet a ton of you answered yes. If you answered yes, then please think about doing this.

  • Reach out to your friends or family, send them a message just to say hello. 
  • Don’t get mad at them if they can’t come to all of your parities or get togethers, sometimes it is just too hard. 
  • If they seem to disappear sometimes it is not personal, life can be rather tricky for them. 

I only ask this of you, always have empathy, always remember that every family looks different. Please don’t judge your friends or family or strangers on how you think they are raising their kids.

PLEASE ALWAYS REMEMBER THIS ONE LAST THING (I said it earlier)

As the parent of a child with special needs we are just trying to get through the day!

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My sister Rachel is an amazing person, Dear Manifesters. Please share this post and support us at GAMEyoga.org even if it is just by smiling at someone who may seem a but different. 
I have made t-shirts and all money is going to Prader Willi research and well as Tay Sachs research. Please order shirts by emailing Jennifer@JenniferPastiloff.com and specify size. Also, if you are not a fan already, become one of the ” I am a Fan of Somebody with Prader Willi Fanpage” on Facebook here.
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