“Transplantation is human resurrection, raising me from death to full life. It is the gift that keeps on giving. Everyday I am amazed at what I can do, and all the opportunities that come my way because I can breathe. ”
My life is dedicated to Xavier Jesus Cervantes, an 18 year old boy who died in a car accident. He lived near Fresno, CA. Several months before his accident he told his mom if anything ever happened to him he wanted to donate his organs so that he could help people. He was bright, energetic, helpful to those less fortunate, loved trucks, construction, fishing, his best buddies and his family. I am forever indebted to his maturity and generosity.
Deep breath....
Sigh....
The best gift in the world.
Wrote and published a book with my twin sister Anabel, also a lung recipient times two, and it is dedicated to our donors. We are donating some proceeds to cystic fibrosis and organ donation awareness. We will soon do a cross country road trip book tour.
I joined the San Francisco Stewart Tartan Pipes and Drums and play bagpipes to celebrate and challenge my lungs. I am a social worker and health educator by training and look forward to returning to work when our book project winds down.
I spend a great deal of time exercising my body, and also traveling to see the world, since I am healthy for the first time in my life.
I volunteer for the California Transplant Donor Network, and belong to TRIO Bay Area. I am on Team Northern California for the US Transplant Games. I do a great deal of public speaking for organ donation awareness and also for the cystic fibrosis community. I also was blessed to be on the Rose Parade Donate Life float on New Year's Day 2008. In July 2008, I will serve as Patient Advisory Committee member for UNOS. I am the Chair of the Cystic Fibrosis Research Inc. Conference Committee and my twin and I are co-chairs of the Heroes of Hope Program for People Living with CF. I am a board member for the Breathing Room, a CF artistic expression nonprofit.
Writen by Anabel Stenzel
My identical twin sister, Isabel, and I were born with a genetic disorder called cystic fibrosis. Cystic fibrosis (CF) is one of the most common life threatening genetic disorders affecting more than 35,000 Americans. A genetic defect in cells results in thick mucus that clogs the lungs and digestive tract, causing frequent pneumonias and breathing difficulties, poor absorption of nutrients and intestinal obstructions. Since childhood, we were hospitalized frequently for intravenous antibiotics and had to do breathing treatments four times a day. These treatments consisted of inhaling medications to open the lungs and thin the mucus. We also did physical therapy on our chest, in which my parents had to pat our backs to help loosen the thick mucus so we could cough it out. By our mid-twenties, we had been hospitalized over thirty times for pneumonias. Despite aggressive care, we were plagued with progressive congestion and coughing fits. As twins, we shared the disease and we helped each other stay motivated and disciplined with our medical treatments. Our symbiosis was vital for our survival....More
The Power of Two: A Twin Triumph over Cystic Fibrosis
By Isabel Stenzel Byrnes & Anabel Stenzel
University of Missouri Press
We hope you are well! We are excited to update you about our memoir, "The Power of Two: A Twin Triumph over Cystic Fibrosis." A lot has happened in the four months since our last update, including a six-week cross-country book tour and another phenomenal experience at the U.S. Transplant Games!
In April and May, we logged 9,960 miles over 40 days as we visited bookstores and gave lectures from coast to coast. We connected with amazing friends -- old and new -- and are extremely grateful for their warm hospitality. For a full report,
check out the April and May posts on our blog. We feel so blessed to have had such a fabulous adventure.
The summer brought more excitement and exhilaration. The highlight came in July, when we competed in the life-affirming
U.S. Transplant Games in Pittsburgh, Pennsylvania, and had a booth at the Games Expo where we displayed "The Power of Two." Both of us competed in swimming; Isa also ran track and played her bagpipes at the Donor Recognition Ceremony. In early August, we featured our book at the
Cystic Fibrosis Research, Inc. Annual Education Conference.
In other news, we are especially thrilled to announce that "The Power of Two" has just been accepted for translation into Japanese and publication by Iwanami Gendaibunko, a prominent publisher in Tokyo! We anticipate that the Japanese version of "The Power of Two" will be released in mid to late 2009. This is a wonderful opportunity to educate the Japanese public about the benefits of organ donation! If you have contacts in Japan whom we might contact about the book, please
email us.
Our fall schedule is packed and we continue to feel thankful for the opportunities "The Power of Two" has made possible. One highlight is the
West Hollywood Book Fair in Los Angeles on September 28. Please consider attending if you are local, or tell your L.A. friends to stop by our booth. We'd love to see you!
Click here or scroll down for a full schedule of all of our fall events across the country.
Nine months since its release, we continue to treasure the tremendous support we've received for "The Power of Two." The emails and letters of appreciation, from friends and strangers, have been overwhelming. Thank you to all of you who have bought (sometimes multiple!) copies, spread the word, or arranged speaking engagements for us. We are especially grateful for the grants we have received to provide free books to families at some cystic fibrosis education events. And, thanks to your generosity, we've donated nearly $1800 to CF and transplant charities from book sales.
The third printing of "The Power of Two" is almost sold out but, don't worry, they can always print more! If you haven't had a chance to read the book yet, or have a friend, family member or colleague who would find our story compelling, please
purchase "The Power of Two" today. "The Power of Two" is also available in
hundreds of libraries nationwide.
Thank you for your continued support. We wish you all deep breaths and health this summer and fall.
Sincerely,
Isabel Stenzel Byrnes and Anabel Stenzel
Authors
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You are cordially invited to our upcoming events:
Please see
www.stenzeltwins.com for the most up-to-date information.
- Saturday, August 23, 2-5PM Children's Hospital of Louisville Cystic Fibrosis Education Day, Louisville, KY +
- Friday, September 5, 1:30-3PM Saratoga Book Club, Saratoga, CA
- Sunday, September 28, 9AM-6PM: West Hollywood Book Fair, West Hollywood, CA
- Saturday, October 18, 6-9PM: North Bay Cystic Fibrosis Foundation Gala, San Francisco, CA
- Tuesday, October 21, 12-1PM: Ft. Myers Children's Hospital of Southwest Florida Cystic Fibrosis Center "Lunch and Learn" Seminar, Ft. Myers, FL
- Monday, October 27, 8:15-9:15AM: Book lecture only at the National Society for Genetic Counselors Meeting, Century City (Los Angeles), CA
- Monday, November 3, 4-6PM: UC Berkeley School of Social Welfare Colloquium, Berkeley, CA
- Friday and Saturday, November 7 and 8, 2008: University of Kansas at Wichita Grand Rounds and Cystic Fibrosis Education Day talk and signing+
+ Cystic Fibrosis Education Days are not normally open to the public, unless prior arrangements are made. Contact us by replying to this email for details.
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What You Can Do If You Are Moved by The Power of Two:
- Recommend The Power of Two to family, friends, colleagues, book clubs, places of worship, instructors, students, health care providers, and people with health challenges. We want this story to educate them about CF and organ donation, and give them hope.
- Recommend The Power of Two to be selected for 'One Book- One Read' book event- usually done through a library (http://www.loc.gov/cfbook/one-book.html)
- Give The Power of Two to people you know who work in medicine, research and biotechnology. We want these inspiring scientists and caregivers to know they are making a difference in the lives of people with medical challenges.
- Recommend The Power of Two to people you know who teach college classes at university or college.
- Suggest The Power of Two to Oprah: www.oprah.com/email/reach/email_showideas.jhtml
- Write a book review on amazon.com; bn.com; or an independent bookstore website.
- Ask magazines, newspaper or radio stations to review The Power of Two.
- Consider volunteering for your local cystic fibrosis organization.
- Tell people about cystic fibrosis. Be an ambassador for CF education.
- Sign up to be an organ and tissue donor at http://www.donatelife.net. Find out whether your state has a legally binding online donor registry. If you are from California, the state registry is http://www.donatelifecalifornia.org.
- Talk to people you know about the importance of organ and tissue donation.
- Consider volunteering for your local organ donation organization or organ procurement organization.
- If you smoke, try your very best to stop. We don't want you to ever suffer from lung disease.
- Check your blood pressure to make sure you are well and your kidneys can function for as long as possible. Same goes for your other organs.
- Do something good for your health. Eating healthy and moving more are the first steps.
- Make a donation to Cystic Fibrosis research by supporting the Cystic Fibrosis Foundation or Cystic Fibrosis Research, Inc. Help fund the breakthroughs for the next generation.
- If you meet someone with cystic fibrosis, ask them about their lives. This is more valuable than any dollar donation.
- Advocate for public policies that help people with cystic fibrosis and organ transplants, such as laws pertaining to health insurance and biomedical research. You can write your senators or representatives and ask them to read The Power of Two and support these issues.
- If you have CF, consider joining a clinical trial to help make the breakthroughs happen for you and the next generation.
- Ask people about their stories. You can understand them better.
- Tell people your story. They can understand you better.
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The Power of Two: A Twin Triumph over Cystic Fibrosis | 1277 Westwood Street | Redwood City | CA | 94061 |
