Last night I had the honor of attending the launch party for Valor Hairspray at Pearls Rooftop on Sunset. Here, is Gina Elise, founder of Pin-Ups For Vets with Beauty & Pin-Ups founder. Gina’s photo is on the bottle and 10% of all sales of Valor, go to Pin-Ups For Vets, a non-profit organization supporting America’s hospitalized veterans. As someone who spent 45 days in a long term care unit, I know the need for support of hospitalized veterans. Many of the veterans I met while there were permanent residents and rarely have visitors. And by rarely, I mean; never have visitors. Pin-Ups for Vets volunteers visit hospitalized veterans. Volunteers are a mix of civilians, active duty and veterans. They sit down, visit, and get to know hospitalized veterans. Four of the eight women you can see in this photo are veterans, the two women on the viewer’s left are active duty military who traveled from San Diego for the launch party.
I have met so many wonderful women with Pin-Ups for Vets. Those of you who know me, know that I’m very self conscious of my hands, and the way #scleroderma has changed my face. I’m so self conscious, I try to hide myself in public, contradicting my own goals of educating the public about scleroderma. (The Mighty Turtle) I rarely go sleeveless and shy away from photos. (I’m in the black and red polka dots on your far right – you can’t see my face. See what I did there?) The fun of learning Pin-Up make-up and fashion, has been slowly luring me out of my shell.
Since the birth of my son, twelve years ago, I have been trying to take more pictures for him, but I do it as little as possible and I rarely share them. Pin-Ups for Vets is made up of men and women who have made Brave Is Beautiful a reality to me. I can count on them for encouragement and inspiration. There is something special about getting ready for events and pin-up fashion that has encouraged me like nothing else has done before, and I’m learning how to smile again for the camera.
Keep an eye out for more adventures and like Pin-Ups For Vets page on Facebook, and their touring members, Pin-Ups on Tour. Pin-ups on tour will be embarking on a tour to entertain with shows that embody the 1940’s cantina atmosphere of World War II, and visit veterans in hospitals around the country
When I met James Reoumelotis, and his brother Chris, James was on his pogo stick at the Orange County Fair. I had never heard of Pogopalooza but after watching gravity defying stunts, I understood what the exitement was all about.
The atheletes and support teams of Pogoplooza, had clearly heard of scleroderma. The Emcee (Will Weiner was one of them ), was not shy about sharing what James was doing. James was going to break a world record, and he was going to do it to make a lot of noise about scleroderma.
I was amazed by James’ determination. The support of his big brother Chris didn’t surprise me, because I have a brother just like him. Someone who will drop what he’s doing to fly far from home and walk beside me calmly while inside, he is stressed to the max- worrying about my health. I felt lucky to be in the presence of such an amazing team.
James and Chris, were not alone. During the 10 hours I was there, I saw every extreme pogo athelete grab a stick and jump the track with James. All the while, the Pogopalooza Emcee made sure everyone within earshot had heard of scleroderma.
Like any patient with a chronic illness, those they love walk beside them on their journey, but enduring that journey is up to the patient alone. Like many patients, James had people beside him, but it was he, and he alone who had to endure, to cross the finish line. And cross the finish line he did, to a roar of cheers of those who walked beside him.
Last year, after 14 hours, 32 minutes and 598 laps, James broke the record for distance on a pogo stick: 23.22 miles. And yes, he is in the Guinness Book of World Records.
July 26, 2013, James will be breaking another record at Pogopalooza 10, so that scleroderma patients may endure. He is raising funds for
As a patient with scleroderma for 20 years, I am still here because of the research done, made possible because of the work by people like James, and those who walk beside him.
Donate, so that scleroderma patients may endure for remission, a stable condition and eventually, a cure. Donate, so that more patients will cross the finish line of scleroderma survival, to a roar of cheers by those who love them.
I heard about Chris Dean’s blog, Life Your Way! in June of 2012. Since that time, I try to read her blog every day. It is truly where “Health and Humor Meet in a Head-on Collision”. I am supporting her nomination as Miss Congeniality and I nominated her for Hilarious Health Activist. I am encouraging you to go HERE and vote for her confirmation, or HERE to nominate her.
Okay, now I know that you are no minion and need proof. (I love that about you by the way!) So you can read more about me going on and on about her, or you can just skip to the end and go HERE and read her blog posts. I encourage you to do both, but I understand there is your time to consider. I’ll be brief but I won’t be offended if you head right off to Chris’ blog.
Chris writes openly and candidly. She is brave in her sharing and appears not to be afraid to admit her short comings. In fact, she will point them out to her readers and make them laugh with her. She has no agenda. Sure, all bloggers have a small urge inside them for total world domination; and Chris has told me herself, “It takes a special kind of crazy to be a blogger.”
When I read Chris’ work, I feel I am reading the words of someone who enjoys writing. I feel like she does it because it’s fun and it helps her cope with the craziness that comes with being diagnosed, misdiagnosed, re-diagnosed, etc…
Chris posts every day, whether there it’s NHPBM or not. She doesn’t write about life at her pity party, she invites you to join the party on her blog. Her life, like everyone else, is not perfect. She poses great questions about her health and health topics and brings to light facts about her condition and the conditions of others. She uses humor to teach and it is her talent. I always feel better after reading her posts. I have learned about things like; birding, alternative methods of yoga- and Joe My Zod, have you seen her artwork?!! (Ah, WEGO, consider this my suggestion for an art category next year!)
Chris calls her art therapeutic for her, but to those like me who admire it, it is a gift of expression. When I look at her art, I FEEL something. It is a representation of her feelings and thoughts, and her art makes me get a feel about what she’s feeling. And I look at many and think: I feel like that too. I can’t put it into words, but I can show you some of the things I feel with her art work.
I could go on, but honestly, experience it for yourself if you haven’t already. Read her words, see her pictures. Everyone has their own reactions to art and words. I know that if you take the time to check out her blog; you will laugh, you will learn, and I hope you too find something she has created that explains something you can’t describe in words.
Chris’ Blog: LIFE YOUR WAY!
Facebook: Invisibly Ill (show some love with a like)
I have nominated Paul Fugelsang for a 2012 Wego Health Activist Award: Trail Blazer. I wrestled between Silver Stethoscope and Trail Blazer because Paul is a practicing, licensed therapist in North Carolina. He has come up with a way to help clients see therapists who will offer mental health care at reduced rates. Paul Fugelsang recognized the biggest barrier to mental health care in the United States is money; and he is doing something about it. I was inspired to share his work here in The Mighty Turtle’s Fundraising and Activist Spotlight.
Those of you who keep up with this blog, know I receive outstanding mental health care, courtesy of my friendly neighborhood Veterans Hospital, but there are millions of people in our country going without the proper mental health care they need because they are not “lucky” to be a service connected disabled veteran.
People go without because they fall through the cracks. They make too much money to qualify for aid and if their insurance does cover mental health care, it’s often inconsistent and short term because of higher copays. There are waiting lists, long office waits times and some mental health clinics offered are on a first come first serve basis. The United States has come a long way with progress in mental health care, but we still have a long way to go. There is hope because of practitioners like Paul Fugelsang, founder of Open Path Psychotherapy collective: A program that will connect patients with therapists.
In Paul’s words, “Open Path Psychotherapy Collective will be a network of like minded mental health clinicians dedicated to reaching those individuals and families who are falling through the cracks. The Collective—with the support of the Foundation for Excellence in Mental Health Care (FEMHC)—will match participating clinicians with individuals in need of local, in-office mental health care—for a steeply reduced rate.” (From Interview with Kelly Carlin.)
Paul’s goal is to “Create a nationwide collective of mental health practitioners who are in private practice who all agree to see one or two low fee paying clients. A goal of 2500 sessions per week… of low fee therapy nationwide.” (As said in an interview by Kelly Carlin.)
I think it’s an excellent start to an amazing, non-profit nationwide program to help those who need mental health care and are falling through the cracks. How is that NOT trailblazing? Go now and nominate Paul Fugelsang for a 2012 Wego Health Activist Award. Then, be sure to spread the word about the fundraising that ends November 15th. After that, watch for the launch of Open Path Psychotherapy Collective. Watch Paul blaze a trail to help those who seek it, get mental health care they need.
Do you know my friend Chris? She’s an amazing artists. Today, please enjoy and share her work. Friday, she whipped up this amazing picture for Team Joey. This work of art deserves its own post to show Chris’ work and Joey’s page. Please follow the links below to learn more!
My sister Andrea is part Mary Poppins, part MacGyver with Moves Like Jaggar. She is organized, energized, a true Virgo and I am proud to call her my little sister. I’m not featuring Team Joey in my first Fundraiser Spotlight because my sister Andrea has incriminating photos: I’m featuring Team Joey because my sister, Andrea Brookshore, is one of Joey’s Angels.
A Community Comes Together
Joey’s Angels is the team behind the scenes, organizing the activities of Team Joey; a small community in upstate New York, that has come together to raise funds and help eleven year-old Joey’s family pay for his life saving medication and expenses. Joey’s Angels organize events, make phone calls, inventory donations and keep Team Joey running like a well oiled machine of love and support to Joey’s family. Joey’s Angels know the well being of his family is just as important as his cancer treatment.
Falling Through the Cracks
In addition to Joey’s diagnosis, his parents Holly and Ben, were devastated to learn their insurance only covers $5,000.00 of prescriptions each month. Joey is in stage 2A of Hodgkin’s Lymphoma. That means Joey has “involvement of two or more lymph node regions.” (National Cancer Institute). The urgency for treatment is obvious, but at $3,500.00 per dose, Joey’s chemo is the tip of the iceberg. Joey’s family has to travel three hours one-way for treatment, while maintaining two incomes to put food on the table and keep their house and manage a “gift with purchase”: The overwhelming worry of loosing a child and brother to cancer.
Joey’s family is one of many who fall through the cracks. They don’t qualify for Medicaid because their income is to high; and they certainly do not have the cash to cover the expense of paying for treatment up front. That’s right; payment for treatment is required up front. They don’t get billed for chemo shots and Joey doesn’t receive his life saving treatment before payment is made in full. Luckily, Joey and his family have a fleet of angels.
Joey’s Angels, have taken the Team Joey Facebook Community, from zero to 486 likes as of 10/18/2012 at 9:29pm- less than three weeks after launching. But this Facebook page is about more than just getting “likes”. This page is filled with the pictures and prayers of a small community working hard to lighten the load of one family. There are pictures of the recent can drive, items for raffle and updates about Joey’s progress.
What strikes me most about this community is watching human beings at their best during the worst of times. There is nothing fun about watching a family cope with cancer, but I see a community “Dancing in the rain.” And this Saturday, dancing is exactly what will happen.
This Saturday, October 20, Team Joey is dancing in a Zumba Fundraiser for Joey’s treatment and family’s expenses. There is nothing more painful to a parent than the helplessness of watching your own child fight for his life. But because Ben, Holly, Hanna and Joey have the support of Team Joey, I have unyielding hope this family will prevail intact. The load of things like expenses will be lightened by the help of their community, giving the family time to focus on each other, where their strength is needed most.
Holly, Joey’s mom, is a Zumba instructor and while she is at home with Joey and my nephew Oliver, her teaching partner, Dani will be leading over 300 people in a Zumba class with Holly’s husband Ben and their daughter Hannah. In this way, the community will be putting their minds and bodies in the game, if only for 90 minutes. Nothing is more powerful than souls coming together in dance. Humans have been doing it for millennia for a reason. It’s not just 90 minutes of dancing; it’s 90 minutes of empowerment that will strengthen the bond of this community. There will still be still more work to do when the music stops, but for 90 minutes, more than three hundred people at a school auditorium in Upstate New York, will cry out in one loud voice “No!” to the cancer in Joey’s body. Dancing in the rain of tears, prayers and love.
You and I may be reading about Team Joey a few thousand miles from the Zumba Fundraiser this Saturday, but we can help through the power of social networking. Share this story. If 500 people read this post and 100 of them can kick in $3.00 each, that’s $300.00. Imagine what could happen if 500 people share Team Joey’s page. There is no such thing as a small act of kindness. Visit and “like” Team Joey’s FaceBook page and see how you can make a big difference with a small donation. If you live nearby, you can participate in the Zumba Fundraiser, upcoming spaghetti dinner, raffles and events in the works. Joey’s fight has just begun. Please join Team Joey and make a difference.
About Hodgkin’s Lymphoma and the Possibilities of Successful Treatment
Hodgkin’s Lymphoma is one type of cancer with many stages and types. It can occur in children and adults, which makes Hodgkin’s Lymphoma is an equal opportunity destroyer. Follow the links to learn more. Cancer research has created the possiblity for treatment of other diseases; such as immunosuppresants for autoimmune diseases, better treatment of medication side effects and complications, patient care and caregiver education in not just cancer, but all illnesses. Progress in cancer research helps all, and we are in this together. Cancer gets a lot of publicity, but it ‘s not enough because people still die of cancer. Now that there is treatment to put cancer in remission, large amounts of money to pay for life-saving treatment is now needed because patients like Joey, are falling through the cracks. Join us and support the fight for Joey’s life. Thank you.
Links to Join Team Joey & Learn More About Pediatric Hodgkin’s Lymphoma