Conference Call: "Anyway" campaign for Cystic Fibrosis: Laura Osnes, Gideon Glick, Emily Kramer Golinkoff, & Elizabeth Phillipson-Weiner

Conference Call: "Anyway" campaign for Cystic Fibrosis: Laura Osnes, Gideon Glick, Emily Kramer Golinkoff, & Elizabeth Phillipson-Weiner

Everyone struggles with something. But there are a few of us out there who struggle with chronic illness. It's these challenges that bring people together. When I read about Emily Kramer Golinkoff's battle with Cystic Fibrosis and how Elizabeth Phiilipson-Weiner, who combats Crohns' Disease, wrote a song (and subsequent music video) of hope called "Anyway," recorded by some of Broadway biggest names (Laura Osnes, Gideon Glick, Christy Altomare, Javier Muñoz, & Sarah Levy), to help raise awareness for Cystic Fibrosis, my interest was piqued.

"Anyway" is an anthem to encourage others to rise above their circumstances and create change for themselves and within their communities. I feel so lucky to have had the opportunity to interview Emily & Elizabeth about their battles, coming together, and creating this joint project! The icing on the cake was definitely getting to speak with Laura Osnes & Gideon Glick about their involvement with this very important song.

In 2011, Emily's condition was deteriorating; she was running out of treatment options, and at 33 years old, she decided to do something instead of giving-up. With the help of her family and friends, they founded Emily's Entourage, a Philadelphia-based nonprofit dedicated to accelerating research and drug development for nonsense mutations of Cystic Fibrosis.

Emily's Entourage is asking every person who watches this video to donate $9 to Shine and share the video far and wide. Click here to donate!

For more on Emily's Entourage "Anyway" campaign visit https://www.emilysentourage.org/anyway-campaign and follow them on Facebook, Twitter, and Instagram!

 Elizabeth Phillipson-Weiner (left) & Emily Kramer Golinkoff (right)

Elizabeth Phillipson-Weiner (left) & Emily Kramer Golinkoff (right)

Emily Kramer Golinkoff & Elizabeth Phillipson-Weiner Questions:

1. How did you two come to team up on this project?

Emily Kramer Golinkoff: Elizabeth’s dad is a total rockstar scientific researcher at the Wistar Institute in Philadelphia. We’re honored to have him as a member of the Emily’s Entourage Scientific Advisory Board and Leadership Team. At the end of one of our highly scientific phone meetings, he said, “I have something unrelated to share with you.” My mom and I both looked at each other, puzzled, wondering what could possibly follow. What he proceeded to share is that his daughter, Elizabeth, had composed an original song, and that it was inspired by Emily’s Entourage. We were... flabbergasted.

Elizabeth Phillipson-Weiner: Emily and I grew up in the same town. We’re eight years apart so we didn’t overlap at school but if you’re from my home town, you know about Emily and the incredible work she’s doing. The year Emily and her family launched Emily’s Entourage, I was experiencing a really bad flare up of my disease and was burning through treatment options quickly. It was really scary. I immediately felt a kinship with Emily when I saw there was someone else from my hometown who was doing something about their chronic illness. Flash forward to last fall, I attended a songwriting retreat where we were asked to write a journal entry about the thing we liked most about ourselves. The things I liked most were born out of the challenges I’d faced due to having Crohn’s disease. We were put into groups of three to co-write songs using the journal entries as our guide. With the help of my two co-writers Emma Holden and Nkechi, "Anyway" was born. I immediately thought of Emily and wanted to send the song to her. My dad was able to play it for her at a meeting and the rest is history!

2. How do you hope this song/video brings awareness to Cystic Fibrosis?

Emily Kramer Golinkoff: We believe that our plight against Cystic Fibrosis is, at once, both incredibly personal and also universal. We believe that everyone faces adversity that can, at times, feel intractable. And we believe that when we come together, united around a shared goal, that we’re infinitely more powerful than we ever realized. We believe in people and we believe in communities.

Our hope is that we can use music and art and film to bring critical awareness to our urgent quest to accelerate breakthroughs and a cure for nonsense mutations of Cystic Fibrosis. Our hope is that people will connect to the message and feel inspired to shine their light (to activate their internal reservoir of capability and power) to help defeat Cystic Fibrosis with a donation of $9. We’re asking everyone to #GIVE9toSHINE.

Elizabeth Phillipson-Weiner: This project is all about the power of people. You don’t have to be a billionaire, or a genius scientist or a hollywood producer to help. We want people to feel like there’s no barrier to entry for them to help!

Emilys Entourage Logo.jpg

3. How did this song help each of you?

Emily Kramer Golinkoff: "Anyway" is an anthem about tenacity and resilience, about refusing to accept the status quo and rising above adversity to make change for yourself and your community. That is, at its core, what Emily’s Entourage is all about.

Furthermore, the whole process of producing the video has been a perfect embodiment of the central themes of Emily's Entourage—the kindness of people, our power when we come together, and that no dream is too audacious when we set our sights on a goal and work fearlessly, tirelessly and with laser focus towards achieving it.

It’s been an honor to partner with Elizabeth. This is her vision and to watch it come to fruition so exquisitely has been a true privilege.

Elizabeth Phillipson-Weiner: Before writing “Anyway” I was very private about my illness. To be able to express how I feel was really cathartic and the whole experience of turning it into a campaign to help others has been so meaningful. Working with Emily has been so empowering and overwhelming. This woman is dealing with so much and the urgency of her situation is palpable, it makes you want to push yourself further, to make faster and bigger changes than you knew were possible.

4. The song features Broadways stars, including two-time Tony nominee Laura Osnes (Grease, Cinderella, Bandstand), ideon Glick (Spring Awakening, Significant Other), Christy Altomare (Mamma Mia, Anastasia), Javier Muñoz (In The Heights, Hamilton) as well as Hollywood talent such as Sarah Levy (Netflix’s Schitt’s Creek). How did you go about securing these talented artists for this project?

Elizabeth Phillipson-Weiner: Featuring stars wasn’t something we knew we could do, it started out almost as a pipe dream. We knew we needed to engage a large audience and bring attention to the work Emily’s Entourage is doing from people who wouldn’t normally be looking. I literally started by just cold contacting agents, managers, etc. I asked friends and mutual friends, people who were three or four degrees of separation from me. We did receive a lot of “no’s” but whenever I got discouraged I would just remember the tenacity with which Emily has to fight and I’d keep going. We ended up with the five most amazing singers we could’ve ever asked for. Not only are they immensely talented but they all have the absolute biggest hearts. None of them have a personal connection to Cystic Fibrosis but they all came with stories of why they wanted to help. It was such an overwhelmingly positive experience to work with them.

5. What was it like when you first met to know there was someone else out there living with a chronic illness, even though they were different illnesses?

Elizabeth Phillipson-Weiner: When Emily and I finally met last fall, it was pretty life changing. Although we don’t have the same illness, we connected over so many issues that face people who are chronically sick. We both worry what tomorrow will bring with our diseases, so we stay up way later than we should, either working or thinking. When tomorrow isn’t promised, you try to pack as much as you can into today. Just to know that I wasn’t alone in these little idiosyncrasies, cause by my experience, was incredible and continues to be. Chronic illness frequently feels lonely and scary, to know there are others out there going through the exact same thing is extremely comforting and empowering. Emily has an illness that requires hours of meticulous care every day. I look at her and I think if she can go through all of that and still do the work she does for others, I can certainly push myself to do a little bit more in my day and to always be a force for good in the world.

6. What have you learned from each other that has helped you on your individual experiences of living with a chronic illness?

Elizabeth Phillipson-Weiner: There are little things of course that have been very helpful - for example I can get pretty bad acid reflux and joint pain and Emily had some great homeopathic suggestions that have helped. The bigger takeaways from working with Emily are about attitude and outlook. There is power that comes from facing adversity and you need the help of others around you to harness that. All you have to do is ask and when the answer is no - persevere, anyway.

7. What is the biggest challenge of living with a chronic illness that you would like people to understand?

Emily Kramer Golinkoff: For me, the greatest challenge in my experience with Cystic Fibrosis was watching so many groundbreaking advances come for roughly 90% of the Cystic Fibrosis population, and realizing that because I have what is called a “nonsense mutation” of Cystic Fibrosis, that none of them would benefit me or others like me. To feel such a dearth of hope, at a time when my disease was so advanced and I had only 35% lung function, was almost too much to bare. It was at that moment that I was faced with a decision. I could throw my hands up in defeat and accept my bad deck, or I could fight like crazy to try to change it.

8. For someone who has just been diagnosed with a chronic illness, what advice would you give them that you wish you had upon your own diagnosis?

Emily Kramer Golinkoff: I was six months old when I was diagnosed with Cystic Fibrosis, so I can’t remember much from back then! If there’s one thing that I’d like to share with the rare disease community today, it would be that we all are infinitely more capable and more powerful than we even realize. I’ve learned that you don’t have to be a billionaire or a microbiologist to make a difference in the world. Sometimes, the thing that is needed in your disease community or whatever slice of the world you occupy, is precisely that thing that YOU can provide. So I hope that people can see the work we do at Emily’s Entourage and feel empowered to take matters into their own hands.

Elizabeth Phillipson-Weiner: I was diagnosed with Crohn’s disease when I was 14 and it was very difficult to have something that made me different from my peers at that time. I wish I’d known that what made me different also made me strong. It’s important to not let your circumstances in life bury you. Dealing with a struggle you have to overcome on a daily basis can make you strong in ways you wouldn’t anticipate or imagine.

 Laura Osnes (left) and Gideon Glick (right)

Laura Osnes (left) and Gideon Glick (right)

Laura Osnes and Gideon Glick Questions:

1. How did you become involved with this project?

Laura Osnes: I got an email with information about Emily’s story and an official ask to be involved with recording an original song to support her cause. I was available and wanted to be involved, and there ya go!

Gideon Glick: I went to the same high school as Emily Kramer-Golinkoff. She was in my brother’s year and they were in the same friend circle. I’ve known Emily since I was a kid so I was thrilled that I could reunite with her for this important cause.

2. What do you relate to most about what Emily & Elizabeth are going through?

Laura Osnes: I think it’s so easy to take perfect physical and mental health for granted. As someone with no previous connection to Cystic Fibrosis, I was compelled by Emily & Elizabeth’s hope, passion to fight, and drive to make a difference. I lost my Mom to cancer several years ago and know what helplessness and hopelessness feels like. I thought the least I can do is sing a few notes to support their valiant ongoing mission.

Gideon Glick: I can’t say I can relate. What they’re both going through is unimaginable. But knowing Emily for so long and knowing she’s been struggling with this for all that time, she inspires me with her fight and perseverance.

3. What was the most challenging part about recording this song?

Laura Osnes: It wasn’t challenging at all — just had to learn a new tune! The team made it so easy. I loved meeting everyone and had a great time. :)

4. The message of this campaign is "When we are faced with challenges and adversity, we can overcome them by turning to others, asking questions, being open to the answers." What is the biggest challenge you've had to overcome in your life?

Laura Osnes: As I mentioned earlier, losing my mom when I was 26 was probably one of my biggest life challenges. I realized in that moment, how loving, caring, important, and generous my friends were. And how vital and real my faith was to me. I wasn’t walking through that dark time alone...in fact, I felt carried through it.

Call Redialed: Mairi Dorman-Phaneuf: "More About The Melody" at Birdland

Call Redialed: Mairi Dorman-Phaneuf: "More About The Melody" at Birdland

Call Answered: Carlotta Summers: "Butterflies" at Kew Gardens Festival of Cinema

Call Answered: Carlotta Summers: "Butterflies" at Kew Gardens Festival of Cinema