When Cystic Fibrosis parents get together, love is there.

 

When CF parents get together, love is there.
It doesn’t take long in a room full of cystic fibrosis parents to see love.
I was honored to be asked to speak to a group of CF parents in Salt Lake City Thursday night. I expected a small group but the room was filled to capacity with me being their only ‘entertainment’ for the evening.

It’s not a stretch to know that talking about cystic fibrosis is far from entertaining…in fact it’s downright sober.
Yet, I smile, and begin.

The room is silent as I talk about cystic fibrosis from my perspective, which has spanned over 25 years.
I am always mindful to the parents new to the CF world, so I try not to focus long on the realities I’ve faced.  My heart is full of compassion for these parents, none of whom have been at the CF parent game as long as I have. None have lost their child to cystic fibrosis, as I have.
I am interactive with them, asking their personal perspective on CF life, asking them their concerns and frustrations, and hoping I can provide them with a few ‘CF tips I picked up along the way.”
I see smiles.
I see tears.
I see my CF family.

There’s always something uniquely special when you meet other CF parents; there’s a connection like no other.  I guess that’s why I always say, “Yes, of course!” when I am asked to speak.

We get each other.
We bond.
We instantly become CF family…for life.

#InThisTogether

There’s love in the room.

In fact, in this room, I could see the love as soon as I walked in.
It was Somer Love, my beautiful, uplifting, CF friend.
Her smile could brighten the darkest of days and her inner vibrance is inescapable. Just ask our server at dinner who gushed as he asked her for her ID. Mind you, Somer is 37 but could easily pass for 17.

Somer doesn’t hide the fact that she’s 37, that she lives with cystic fibrosis, or that she embraces love. In fact, she literally spreads it around as much as she can…with her #LoveToBreathe tokens.
Somer has a quote on her webpage, Love To Breathe “The goal isn’t to live forever, but to create something that will.“-Chuck Palahniuk

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Her tokens have been shared around the world…giving hope and awareness to the Cystic Fibrosis community.
I would strongly encourage you to follow her on her social media outlets…you’d be amazed at how wonderful you’ll feel after reading her posts. (Instagram: @lovetobreathe Twitter: @Love_To_Breathe and Facebook: Love to Breathe)

As much as I learned from all the parents in the room, the caregivers, the medical staff, and pharmaceutical companies, the person who I learned from the most is Somer. She exudes joy and optimism while living with CF, oxygen in tow, and a germ-free ‘elbow-bump’ hello.
Cystic fibrosis is a part of her but it certainly doesn’t define her.

Somer is one-of-a-kind FABULOUS.

Like my daughter, I truly don’t know how they do it; the smiles, the joy, the love.

Jena once told my heart, “When you see love, you’ll see me.”
…and as soon as I saw Somer, I saw the spirit of my daughter.
Love is never far when look for it…and it is even easier when she’s your friend.

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11/12/2016 — Taste of Utah: Salt Lake City

Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at: The Taste of Utah in Salt Lake City     Date: Saturday, November 12, 2016 Time: 6:00 PM The Grand America 555 South Main Street Salt Lake City, Utah 84111 Join us for unforgettable gala, auction and culinary experience, as we feature 25+ of the […]

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11/09/2016 — CF Parent’s Night: Salt Lake City

Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at CF Parent’s Night in Salt Lake City Date: Thursday, November 9, 2016   More information to follow.

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11/04/2016 — Speaking at The Christopher Ricardo Foundation: Miami, FL

Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at The Christopher Ricardo Foundation in Miami   Date: Friday, November 4, 2016 Time: 7:00 PM Coral Gables Country Club 990 Alhambra Circle Coral Gables, FL 33134   More information: For more information please contact: Maria Ricardo via email: mricardo@me.com or by phone: 305-796-7408

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10/20/2016 — Rose to Runway-Stamford, CT

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Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at: Rose to Runway.   More information to follow:   Questions? Contact The Manhattan Chapter of the Cystic Fibrosis Foundation: 424 Madison Avenue, 6th Floor New York, NY 10017 Phone: 212-986-8783 Email: greater-ny@cff.org Executive Director: Martine Denis    

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10/13/2016 — Stride Into Fall-NY

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Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at:   Directions and information regarding Powelton Club:  The Powelton Club

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09/15/2016 — Cystic Fibrosis Scientific Update-NYC

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Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at:      

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06/12/2016 — Cystic Fibrosis Great Strides Walk-Poughkeepsie, NY

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Want to change a life on a Sunday morning? Want to make someone breathe easier and add more tomorrows for those fighting CYSTIC FIBROSIS? What Is CYSTIC FIBROSIS? CURRENTLY THERE IS NO CURE WHAT CAN YOU DO?? DONATE ONLINE HERE OR Use your lungs and take a walk for those who can’t and COME JOIN US! […]

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06/05/2016 — Interview with CBS-NYC

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Want to change a life on a Sunday morning? Want to make someone breathe easier and add more tomorrows for those fighting CYSTIC FIBROSIS? What Is CYSTIC FIBROSIS? CURRENTLY THERE IS NO CURE WHAT CAN YOU DO?? DONATE ONLINE HERE OR Use your lungs and take a walk for those who can’t and COME JOIN US! […]

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04/29/2016 — KPMG Great Strides kick-off event and interview, NYC

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Margarete Cassalina, author of the memoir, Beyond Breathing , will be speaking at the KPMG Office in NYC encouraging them to continued their generous support to The Cystic Fibrosis Foundation. She will also take part in a video interview to help educated KMPG employees to know more about the disease and how they can get involved.

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