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Happy 3rd Birthday Violet!

A letter to Violet on her 3rd Birthday, from her Mommy.

Dear Violet,

Three?  Can it be true?  Would you REALLY have been THREE today?!  For some reason my mind cannot grasp the fact that three years ago you blessed my life.  Three years ago I understood the true meaning of unconditional love.  Three years ago today, I closed my eyes and smelled your sweet  baby smell.  And as I think of these things that happened three years ago today, I also think that you’ve been gone for two and a half years.  And then I feel sad all over again.

I cannot tear my mind away from what you would be like at three years old.  I like to picture you without SMA.   I think you would be running around in a Disney princess dress… and I’d like to think it’d be Rapunzel’s purple dress.  Violet, you remind me a lot of Rapunzel from Tangled.  I watched that movie shortly after you passed away and from the very first time I watched it until any time I will watch it now, and any time in between- I cry.  I love that movie.  I feel like the parents.  I miss you so much.  I wipe away your Daddy’s tears.  We release balloons every year on your birthday.  You are my Rapunzel.  You were locked away in a tower.  SMA was that tower.  It inhibited you from so much.  But you remained a free spirit despite the confinement SMA created for you.  You were special.  Very special.  You had this power to create so much love.  You had a love in your heart that was felt by everyone who met you.  You had a dream.  You had a mission in your short life.  A mission and a lesson I am still learning today.  And in a round about way, you ended up helping to heal ME. 

You sent me your sister.

You healed what had been hurt.  You brought back what once was lost. What once was mine.

Violet.  I love you so much.  Even though I still hurt every single day, the thought of you still makes me smile.   Your bright eyes and little toothless grin continue to heal my heart.  Even though I cannot see you and I cannot watch you grow, I still get to see a piece of you in Piper.  You are with her.  And I know that.  I feel it.  As she toddles around I know you are right there next to her and you are guiding her.

Happy 3rd Birthday my sweet flower.  I hope you see all the pretty balloons we release for you today and you read all our messages.

With so much love and hugs,

Mommy

Flower gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine. 

Heal what has been hurt

Change the fate’s design
Save what has been lost
Bring back what once was mine,
what once was mine.


A Letter To Violet on Your Second Angel Day

Dear Violet,

Today you have been gone for 2 years… sometimes it feels like it was just yesterday I would snuggle and nap with you on the couch and other times it feels like 3 lifetimes ago I last saw your smile.

August will always be hard for me.  Each day seems to have a memory and a meaning.  Each and every day I think of you and smile.  I know you are close by watching over your sister- and don’t think I don’t know you keep her up at night whispering funny jokes in her ears when I hear her squeals of delight.

I am trying to make it a point to not be sad on your Angel Day, because today is the day, two years ago, that you became free.  Free to move however you would like.  Free to run.  Free to leap.  Free to roll down those white puffy clouds in Heaven.  SMA no longer holds your body hostage.  It no longer deprives you of movement.  You are free baby girl.  A beautiful angel who will always be in my heart and close by me.  When I am suddenly surrounded by white butterflies on a warm summer day, I know you are there to tell me you are okay and to remind me how much you love me.  And I know you know how much I love you.

I’m so sorry I cry because I miss you so much.  I wish you were here.  I would give a million dollars and all my possessions to just see you one more time.  You will always be a little baby in my mind.  And I wonder if you’ll age in Heaven… I’ve had dreams of you where you are a little girl.  Are you really 2 ½ now up in Heaven?  When I die, will you be a young woman in Heaven to meet me?  Or will you forever be 6 months old?  I like both ideas.

You are forever my baby, forever my angel and forever my little flower, Violet.  I love you and I miss you with all my heart.

Love,

Mommy


Summer 2012 Events

Hello all!

Two of our largest events are gearing up for the summer.  The 9th Annual FSMA Walk and Roll and the Phillies Game!  Please see below for the details of each event. As always, the support we receive from you for these events mean the world to us.  We hope our friends and family never forget our daughter, Violet.

Thank you!

Allison, Bill and Piper

Families of SMA 9thannual Walk and Roll

May 20th is the 9th Annual Families of SMA Walk and Roll in Philadelphia, PA.  Last year was very special to us because Violet was honored with a beautiful butterfly release in her memory.  This year is especially important to us because it is Piper’s first year for the walk!  We hope that as Piper grows up we can inspire her to help find a cure for SMA and to always remember her sister even though they can never meet here on earth.

Last year Little Flower Violet raised $3,440 just for the walk alone!  That number totally blew me away!

We would love if you could join us for the walk this year, or if you can’t make it, please consider making a donation towards our team.  The Walk in Philly is our Pennsylvania Chapter’s largest event of the year!

Here is the link to register (click “Join My Team”) or to Donate to our team: http://www.fsma.org/LWC/AllisonWehrkamp6636

Here are the details of the event:

When: Sunday, May 20, 2012

Where: Lloyd Hall Recreation Center, 1 Boathouse Row, Philadelphia, PA 19130 (On Kelly Drive, behind Philadelphia Art Museum)

Event Time: 9:30 AM – Check In, Raffle, Kids Activities; 11:30 AM – Kick Off! (Rain or Shine)

Registration Fee: Adults $20, Children (2-17) $10 * Fee includes: Event T-shirt (if registered by April 27, 2012), light fare, music, and kid’s activities.

 Philadelphia Phillies Game:

August 24th marks the 3rd year in a row that Families of SMA has had a special night at the Phillies Game.  Last year, a public service announcement featuring Violet’s picture was shown on the Jumbotron to over 40,000 fans!

Please join us at Citizens Bank Park on Friday, August 24 when the Phillies host the Washington Nationals at 7:05 p.m.

Seating will be located in the Terrace Deck (sections 423-426) at $30 per ticket. Net proceeds from tickets sold through this offer will benefit Families of Spinal Muscular Atrophy.

If you would like to join Little Flower Violet, please email me at alm615@ptd.net by June 20th.  I will buy our tickets as a Group Sale.


Happy Second Birthday Violet!

A letter to Violet on her second birthday from her Mommy:

Dear Violet,

Today is your 2nd birthday!  Has it really been two whole years since you were born?  I wish you were here today… I wonder what your favorite things would be.  What would your party theme be?  So many things I will never know about you…  I am so honored you chose me to be your mommy- it’s the most fulfilling and rewarding job I’ve ever had.  And thank you for sending your sister, Piper, so I can continue doing my job as Mommy.  Two years ago today I held you in arms for the first time and that’s when nothing else mattered but you.  You taught me that being a family is the most important thing in the world.  When I realized that you were there to teach me these things, I remembered an excerpt from a book I read, “Suzanne’s Diary to Nicholas” by James Patterson and the story of the five balls.

Imagine life as a game in which you are juggling some five balls in the air. You name them – Work – Family – Health – Friends – Spirit, and you’re keeping all of these in the air.
You will soon understand that work is a rubber ball. If you drop it, it will bounce back. But the other four balls — family, health, friends and spirit are made of glass. If you drop one of these, they will be irrevocably scuffed, marked, nicked, damaged or even shattered.
They will never be the same. You must understand that and strive for balance in your life. How?
1. Don’t undermine your worth by comparing yourself with others. It is because we are different that each of us is special.
2. Don’t set your goals by what other people deem important. Only you know what is best for you.
3. Don’t take for granted the things closest to your heart. Cling to them as you would your life, for without them, life is meaningless.
4. Don’t let your life slip through your fingers by living in the past or for the future. By living your life one day at a time, you live ALL the days of your life.
5. Don’t give up when you still have something to give. Nothing is really over until the moment you stop trying.
6. Don’t be afraid to admit that you are less than perfect. It is this fragile thread that binds us together.
7. Don’t be afraid to encounter risk. It is by taking chances that we learn how to be brave.
8. Don’t shut love out of your life by saying it’s impossible to find. The quickest way to receive love is to give; the fastest way to lose love is to hold it too tightly; and the best way to keep love is to give it wings.
9. Don’t run through life so fast that you forget not only where you’ve been, but also where you are going.
10. Don’t forget that a person’s greatest emotional need is to feel appreciated.
11. Don’t be afraid to learn. Knowledge is weightless, a treasure you can always carry easily.
12. Don’t use time or words carelessly. Neither can be retrieved.”

Violet, you taught me what this story really means and the life lessons it describes.  You taught me not to dwell on the past and what could have been and what should have been.  I know that you would never want me sit at home all day and cry for you.  You never wanted to cause our family pain.  A life with SMA is what you chose to experience while you were up in Heaven, before you came into our lives.  And you chose us as your parents and we chose you as our daughter a very long time ago in Heaven.  Thank you Violet for all the lessons you taught me in your short life, and all the lessons you still manage to teach me even though you aren’t physically here.  The day you were born, I became ALIVE.  We will ALWAYS remember you, even when it seems others have forgotten you.  You will ALWAYS be our daughter, we will never exclude you. I will always be your Mommy.  And I look forward to the day I will get to see you in Heaven again.  I love you with all my heart Violet.  Happy 2nd birthday baby girl!

Love,

Mommy


In A Year

One year…. One whole year since I last held my baby girl… One whole year since I last kissed her smiley face… One whole year since I
snuggled with her… One year ago today my little baby girl became free of the disease SMA- she now runs and plays in the clouds and looks over our family and gives us strength…this year has been difficult to say the least, but somehow we made it through…

A couple weeks after Violet passed away last year Bill and I attended a local Compassionate Friends meeting. Compassionate Friends is a national organization that holds local meetings for bereaved parents.  While we only ever went to one of these meetings, we gained a lot and we met some really nice people- especially The Arroyo family, who lost their daughter Khloe to SIDS in March of last year.  We felt
comfortable and we able to relate to many of the feelings people discussed.  But after the meeting we decided they just weren’t for us.  We never went back, but we remember a very powerful essay that was given to us that day.  I would like to share it on Violet’s 1st Angel Day because EVERYTHING in the article I can directly relate to.  The article says EXACTLY how I feel and I’ve saved it and read it many times wondering if this is still how I’ll feel one year later.

“In A Year

By Amber Melendez

In a year I have learned how truly powerless I am, for I would have given my life for my daughter, ‘Violet’.  I would have given anything asked of me just to hold her or see her smile or even hear her voice just one more time.  But no one gave me that chance.

In a year I have learned that it’s okay to question my faith and to be mad at God.  Some people may get upset or try to push their beliefs on me, but I have to remember they are not living my life, I am.

In a year I have learned that life is not fair and no amount of praying will change that fact.  I have learned that I can mentally be gone,
exhausted, and worn out from fighting yet somehow I find the strength to get through another day.

In a year I have learned that I can cry a river and yet still have enough tears left over to cry some more tomorrow.  I have learned it is possible to live your life, yet be forever stuck in a single moment.

In a year I have learned to hope that there is a heaven and that my daughter is looking down on me from a fluffy cloud, because the alternative is not acceptable.  And I have learned to believe that yes, my daughter does come around, even though I can’t see her, because at odd times and moments, I can actually feel her next to me.

In a year, I have learned the kindness of actions, for it was in my darkest hours that a simple gesture meant so much more than a thousand words.

I have learned that I am able to talk about my daughter more and more and it makes me feel better, even if some people are uncomfortable hearing me talk about her.

I have learned that even close friends may be too scared to talk about my child because they think it will cause me pain.  What they don’t realize is that I already hurt and talking about her will only help me.

In a year I have learned that the friends I thought I had will never understand and may stop coming around, but I will form new friendships with perfect strangers because they are the only ones who understand my pain.

In a year I have learned that well-meaning people will sometimes says the stupidest things when they are trying to help.  I know I have to be patient because they do not understand and probably never will.  And, I have to accept that everyone has an opinion on how I should grieve.  It may not be my opinion, but they will have one!

I have learned there is no time limit; I will always miss my daughter- today, tomorrow, in a year or five years, or even 30 years down the road.  I will still miss her; time will not change that.  I have learned that it is okay to grieve no matter how long it’s been.  It’s My Grief- no one else’s!

I have learned that I am stronger than I thought I was, and yet I am weaker than I ever was before.

In a year I have learned that my memories won’t fade if I take them out and share them with others.  It’s up to me to share the gift that is my child with the world.

I have learned that a terrible monster called Anger lives inside me, and I don’t know what I would do without
him.  Anger has now become a very best friend, much like Sadness and Depression.

In a year I have learned that I can get used to visiting a cemetery, and I will even take pride in making my daughter’s grave the best-decorated one around.  So that anyone who chances by will know that my child was and always will be loved.

In a year I’ve realized that I may get used to taking my precious child flowers instead of toys or clothes, but it doesn’t stop the hurt or erase the longing for what I should be buying.

In a year I have learned that a sweet smell like her baby lotion or even shampoo- no matter how faint- can make me cry in a single heartbeat.

In a year I have learned that even though I hurt, I am lucky to have known her, been able to hold her and love her.  So many people were not that fortunate.

I have learned how to turn away and control myself when I see someone who reminds me of her: a glimpse of a tiny baby dressed in pink, a giggle, or seeing an innocent smile.  And, I wonder if the parents of that child realize how very lucky they are.  I have learned that I may be envious or even a little jealous, but I always wish that child well and hope that her parents never learn my pain.

I have learned to accept that I will never see my daughter walk, or talk, or call me Mommy.  I have learned to accept that I will have no
more pictures: That what I have is it; there are no more coming.

I have learned to accept the fact that in my house, she will never grow old, and I will never know her as a young woman learning about life.  I will never watch her fall in love, or get her heart broken.  I will never have to let her go as she walks down the aisle, and I will never hold her hand as she struggles to give birth to my grandchild.  I will never look at her all grown up and feel pride knowing I gave this world another shining star.  So many things I will never have.

In a very long and heartfelt year full of pain and so many, many tears, I have learned that love alone was not enough to keep my daughter by my side.

I have learned that love unfortunately does not conquer death, but it will outlast it.  And that even after so much pain, some memories will always make me smile, even though I may cry.

In a year I have learned not to fear death, because only in death will I hold my daughter again.

My Baby Angel, ‘Violet Madison Wehrkamp’, is and was the strongest person I have ever known.  She was a fighter who never gave up even when they said she couldn’t win, she did.  And even though she had to leave me, she will live forever in my heart and my memories.”


August is National SMA Awareness Month

August is National SMA Awareness Month.  August also has an extra meaning to me and my husband.  August 2010 was first time we
heard the words Spinal Muscular Atrophy.  SMA didn’t just hit us, it blindsided us.  It felt like a million trucks hitting us all at once and we were powerless to do anything about it.  August is the month I’ve been dreading and am terrified to face.  August is the month we learned about SMA.  August is the month Violet was diagnosed with SMA.  August is the month Violet spent three weeks fighting for her life because of SMA.  August is the month Violet died because of SMA.  August is the month where SMA stole my dreams, stole my hopes, stole my heart and stole my faith.  August is the month SMA ripped me apart.  August is the month where I learned to hate something so much I would do anything, trade anything, give anything to just have my daughter back in my arms, a healthy, normal baby girl.  So while I hate the month of August for obvious reasons, it will not stop me from helping to spread awareness of the disease that robbed me, my husband, my daughter and my family of everything we hoped for.

Will you help spread SMA Awareness and tell at least 5 people about SMA?

In honor of SMA Awareness Month, I’ll be posting daily links on my Little Flower Violet Facebook page about SMA organizations, SMA awareness products, SMA warriors and angels, and other SMA families’ blog posts.  I encourage you, no better yet, I challenge you to repost these links on your facebook page and help to spread SMA awareness across the internet and around the globe- just think of how many people we can touch and help them to understand what the letters SMA stand for and what it means to our children.

Families of Spinal Muscular Atrophy has been coordinating a National Awareness Month for SMA since 1996.  Raising awareness
of SMA in the general pulic can help lead to increased resources for SMA research and better care for SMA patients.  The majority of people, including doctors, nurses and community members, do not know about SMA until it directly affects them.  This is where you can help.

 

Quicks Facts About SMA you can tell 5 friends:

  • SMA is incurable, untreatable, fatal, and underfunded.
  • SMA kills more babies than any other genetic disease.  It is the #1 genetic killer of children under the age of 2.
  • 1 in 40 people are genetic carriers of SMA.  That means 7 million potential parents, most unknowingly, carry the abnormal gene.
  • Approximately 1 in 6000 babies are born with SMA; two children each day in the United States. Over 60% of children are diagnosed before 6 months of age and 90% of those children will die before their second birthday.
  • Many families who have children with SMA have NO FAMILY HISTORY of the disease.
  • SMA can strike anyone of any race, age, or gender.
  • SMA is characterized by the dramatic loss of spinal motor neurons, resulting in muscle weakness, atrophy, and in the worst cases, the loss of ability to swallow and breathe all leading to paralysis and then death.  SMA affects the voluntary muscles for activities such as crawling, walking, head and neck control as well.  The mind remains unaffected, while the muscles waste away.  Children with SMA are very bright, playful and very social.
  • With your help, groundbreaking research will continue to be funded around the world, each finding further unlocking the SMA puzzle.

 

What can you do to help spread SMA awareness?

 I encourage you to look up your state and find the activities and fundraising events going on around you for SMA.  Click here, pick your state, and see: http://www.fsma.org/FSMACommunity/Chapters/

Share this blog post or share our Little Flower Violet Facebook page on your Facebook page.

Plan an SMA fundraiser of your own.

Take the Getty Owl Foundation challenge and tell 5 people about SMA.  Click here to learn more.

Talk to your OB/GYN about SMA and offering carrier testing to pregnant women.

Get the SMA carrier test yourself and tell your family and friends to get the SMA carrier testing if they are pregnant or planning on
becoming pregnant.  It is a simple blood or saliva test.

Make a monetary donation or donate your time to a SMA organization of your choice (for example: Families of SMA, The Gwendolyn Strong Foundation, The Getty Owl FoundationSophia’s Cure Foundation, and SO MANY MORE!)

Create a flyer about SMA and distribute it around your community.  Another great idea is leaving a flyer in your check after dining out- spread the word about SMA!

Call your local newspaper and ask them to write up an article in the Health and Lifestyle section educating your community about SMA.

Know an SMA angel or warrior?  Help spread their story!

Go shopping at any Macy’s Department Store nationwide on August 27th with this special shopping pass for only $5 (donation
goes to FSMA) and SAVE 25% ON YOUR ENTIRE PURCHASE! Click here to get yours!

Purchase a baby blanket at Lullaby Blankies and 50% of each blanket purchase will be donated to the Gwendolyn Strong Foundation for SMA Awareness Month

Come to Little Flower Violet’s Mary Kay Party in memory of our Violet on August 13, 2011 (Click here for the info)- 20% of sales will be donated to FSMA – Can’t make the party? Order online from August 13- September 1st at www.marykay.com/jcorcoran9

Honor SMA Angels on August 13, 2011

Join us, our SMA family and SMA organizations around the globe by lighting a candle the evening of August 13, 2011 to remember and honor our SMA Angels who have lost their battle with SMA, but are now free in Heaven.


T-shirts and Event Update!

Hi everyone!!

First off, our purple T-shirts have arrived for Little Flower Violet!!  T-shirts are a $12 donation.  If you would like one, click here!

And here are some updates on our events coming up:

FSMA Walk:  If you are joining us for the walk, please register by April 25th: http://www.fsma.org/LWC/dsp_DonationPage.cfm?idEvent=5885&idUser=8496  We have almost reached our goal!  Donations are also accepted on that webpage if you cannot make the walk and want to make a donation to our team! :-)

Phillies Game:  If you would like to join us for the Phillies game on June 14th, please email me at alm615@ptd.net with the number of tickets you need by May 1st-  I’ll be ordering our tickets as a groups so we can all sit together!  Tickets are $28.

SMA Summer Fun Fair:  Raffle tickets are still available to win an iPad2, Flip HD Video Camera or Kindle!  Tickets are a $20 donation.  If you would like one, email me at alm615@ptd.net.  Winners are announced on June 4th!  And check out the official page: www.SMASummerFunFair.org

For full event details click here!

Thank you again for all your support!

~Allison


Upcoming Events!

Check out our Upcoming Events page!  We just posted 3 new events for this summer!

~Allison


Happy First Birthday, Violet!

Today is my daughter, Violet’s, first birthday.  And while she may be celebrating it in Heaven we know she is looking down upon us all.  Today we will not focus on the fact that she passed away, but we will celebrate her life.  She was a beautifully unique little girl who had such a personality.  She ADORED animals, especially lions.  We always took her for walks in her stroller in the park.  We had an amazing vacation at the beach and she couldn’t get enough of the pool!  She affected the lives of many people.  She had an old soul and taught us so much about ourselves and others.  We love you “Girl Face” and we will ALWAYS remember you as our daughter and the joy you brought to our lives.  Thank you for blessing us with your love.

 

A letter to Violet from Mommy on her first birthday:

Dear Violet,

Hello my sweet, sweet baby girl.  I love you so very much and I miss you so!  Today is your first birthday!  I am so sad that we can’t do everything we planned to do for you today.  I know all your angel friends in Heaven are throwing you a BIG party!  I bet there are lions there, and elephants, and fish too!  All your favorite things!  Run free, skip, roll down those white cloudy hills!  :-D

I remember exactly how I felt one year ago today…  The moment you were born I couldn’t believe how angelic you looked.  We did not know then that you truly were an angel from above.  I remember holding you and smiling, closing my eyes and just taking in the moment.  I was your Mommy.  As the day went on, I watched your Daddy hold you, rock you, cuddle you, and take a MILLION pictures and videos of you!  He was so proud to be your Daddy.  Nana and PopPop came too and I remember the proud smile across PopPop’s face!  Nana talked softly to you and you melted into her arms.  I will always remember February 18, 2010.  You will always be my daughter, my first child.  My love for you will never die- it knows no limits.

Love forever and always,

Mommy

 

 


Thank you!

From the moment Violet was in the hospital in August, through her funeral and everything after until today, Bill and I have been astonished at the out reach of support we have received. It has been hard for us to sit down and write thank you notes as it just brings a flood of memories which are still very difficult for us.  There are too many people to list outright, but we do want to extend our gratitude and thanks to everyone who visited Violet in the hospital (especially my work friends Becky, Heather, Amy and Rawia for throwing Violet a Half Birthday Party).  Thank you to my work department, GCI, for all the donations and kind words.   Thank you to everyone who helped arrange her funeral services and everyone who sent a floral arrangement. Thank to you to everyone for all the food and restaurant gift cards we received. Thank you to everyone who has helped keep Bill and I busy these past couple months by getting us out of the house and entertaining us (Gary, Ginger and Gabriel!).  Thank you to my friends who have been there just to sit and listen to me cry.  Thank you to everyone who has bought a Hope Calendar (there are WAY too many to list).  Thank you to Josh Mertz for creating our Violet logo.  An extra special thank to to Rijka Jacoby for getting Violet’s first awareness bracelets!  Thank you to our parents for everything- to lose a granddaughter AND to watch your own child hurt takes true strength- you are an ispiration and we love you.  And also a HUGE thank you to the staff at Lehigh Valley Hospital Pediatric Intensive Care Unit- you all made me want to quit my job, go back to school and become a nurse- I don’t know how you do it.

While many of you did things for us and Violet there are a number of you who have donated to Familes of SMA in memory of of Violet and thank you to those who have made a donation for Violet’s Cuddle Blankies.  Thank you for helping to find a cure for this horrible disease.  You have helped create the first step in our dream- we dream for a day where NO family ever has to endure the heartache of losing their child to SMA.  So…. THANK YOU for donating:

Mike and Melissa Wyatt

Nicole Munro

Pat and Bob Dunn, Kate and Jeff

Carrie Fuller

Henry and Gerry Noyes

David and Elena Kuschner

Jeffrey Codd

Brian and Carol Yost, and Family

Christine Sturm

Rajvanti Ahir and Family

Tanya and Trevor Fleege

Amanda and Mark Cantarella

Bette and Lester Hill

Dr. William Jordan

Karen and Joe Van Osten

Christa Calvin

Caroline Perrotta

James Bilello

Lori Wyatt

Ken and Amy Stone

Dennis and Dawn Mancinelli

Roman and Betty Fedyna

Drew and Natasha Van Osten

Barbara Steele

Tom and Kitty Walsh

Cynthia Terlecki

Blanche and Art Thompson

Vicki Dudley

Teresa and Dan Sharpe

Jeffrey Cemelli

Howard and Debbie Yost

Josephine Rufo

Betsy Brown-Daley

Chris Brown

Rod and Monifa Zamor

Pat Trifiletti

Andrew and Leanne Richards

The Sanofi Pasteur GCI Flu Lab

Wiedenbach-Brown Co. Inc.

Filipa LeClair

Virginia Hutchison

Alisha Mancinelli

Jen Mertz

Brenda Gocek

Teresa Grindle

Jolynn Xander

Heather Niemi

Amy Stone

Amy Klipp



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