Above are pictured caregivers for those who attended the
picnic.
BR, LtoR: Phil Degand, Scott Snyder, Ron Wilson, Annette Carr, John Ludwig
CR, LtoR: Marianne Norrenberns, Rich Rhyner, Patsy Henderson, Jenni O'Brien
FR, LtoR: Carre Clow, Roxanne Hmaid, Kay Crump and Phil Degand
Above pictured are Second Wind members who have received a lung transplant as well as those who are waitng.
BR, TtoR: Jack Crump, Geoff Turner, Khalil Hmaid, Tom Archer
CR, T LtoR: Judy Ludwig, Barbara Rhyner, Margarete Wilson, Marian Frentzel, Tom O'Brien, Jack Norrenberns
FR, LtoR: Marian Peck, Linda Degand, and Tracy Snyder
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How to Make a Team
 By Peter NicastroLung Walk Committee Member
The Lung Walk is coming up soon; October 16, 2010. What is more fun than walking 3.1 miles? Why, of course, it is walking 3.1 miles with friends and family. The Lung Walk is even better, for you and us, if you create a team.
Creating a team is easy. Whether you are pre- or post-transplant, a caregiver, or just interested in helping people, you have a compelling story! Reach out to your family: parents, brothers, sisters, nieces and nephews, aunts and uncles, and cousins. Tell them why YOU are doing the Second Wind Lung Walk, and ask them to join you. Tell them about Second Wind and the great work that our Assistance Fund is doing to help people in need. Tell them it would really help motivate you to have them walking with you on Walk day. Have a registration form ready, and sign them up.
When you are done with your family, go after friends, classmates, and co-workers. Do you have a Bunco group that meets every month at someone's house, sometimes yours? Maybe you are good friends with some of your co-workers, could you talk to them about the Walk, consistent with your company's solicitations policy? Maybe you walked with some group at the Komen Race, or at some other event? Ask them too! Tell your story. Be prepared with a registration form.
Finally, think about groups to which you already belong: church groups, community groups, school groups - including those inclined toward community service or health. You already have something in common with these people. They probably already know about you and your connection to lung transplant. You may end up being asked to walk in their walk in the future. That's okay - we all need to be active anyway! Trade walks if you can and build your team.
You might be able to register a few people by sending out an email to your entire address book, but you are much less likely to be persuasive than if you were to ask over the phone. Even better would be in person. If you have a few committed walkers, ask them to help you sign people up. For example, maybe a cousin with whom you are close would be better at getting their siblings to join. You can help your teammates by collecting all the registrations and sending them together, saving everyone (but you) 44˘, an envelope, and a lot of hassle. Bonus: you're sure they're signed up!
Non-walkers but still interested in attending? There is plenty happening on race day for non-walkers to enjoy, including the awesome playground at the Visitors' Center, a great band, healthy food and drinks, and opportunities to volunteer during the race.
Finally, there may be people interested in contributing, but not interested in walking on Race Day. Take contributions cheerfully, and be sure to thank the contributor. Contributions to Second Wind are tax deductible but must be substantiated. Call Second Wind for details. Contributors are just as much as part of your team, and ours, as your walking partners.
What to Do on Race Day
On Race Day, make sure that your team is identifiable, build camaraderie and make sure that everybody can find each other. Make a fun sign out of posterboard on a yardstick with your team's name. Your name can be creative or not; it does not matter as long as you know who you are. Gather in one place before the walk, perhaps so disparate members of your team can meet one another. If you can, based on your knowledge of everyone else, build connections between people who do not know each other based on common interests. Then, walk together! Walk at a pace that is comfortable for everyone. You and your team will have a great time walking with those they know, and the time will pass more quickly. Have someone hold your sign in case somebody gets detached from the group. After your group is finished, celebrate with a piece of fruit and some water. Congratulate each other for finishing and helping Second Wind and the beneficiaries of our assistance fund.
Need more ideas? Contact me, Peter Nicastro, at nicastpj@yahoo.com. Good luck! |
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We Remember
Raymond Hartman
August 1937 - June 25, 2010
Raymond Hartman age 72 passed away on June 25, 2010. He retired from the Chicago Heights Police Department after 31 years as an officer. He was a veteran of the U.S. Navy.
Ray is survived by his wife of 41 years Dolores. He was the father of April (Michael) Roman, Cecil (Lori) Hartman, Shelly Comstock and Angela Hartman. He was the grandfather of David, Shawn, Nicole, Stephen Roman, Caitlin Gath, Michael Hartman, Desirae Young, John Petriekis, and Rayanna Comstock.
Memorials in Ray's name to St. Louis Second Wind Lung Transplant Association would be appreciated. You may mail your memorial donation to Linda Nottestad, 1708 San Simeon Way, Fenton, MO 63128 or www.secondwindstl.org
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 We Remember
Gary Arthur Porte'
April 26, 1947 - July 15, 2010
Mr. Porté was born April 26, 1947, to the late Robert A. Porté and Margaret Porté. He attended Affton High School, and later earned a bachelor of Fine Arts from Missouri State University at Springfield with a major in design and photography. After graduation, his love for the outdoors led him to flyfishing throughout Missouri. At summer's end, he sought a part time position as a staff photographer at Westrich Studio of St. Louis. He remained there for over 8 years under Master Photographer, Robert Westrich.
He also landed a position with the May Department Store Company as a Junior Designer. May Department Stores became a good fit for Mr. Porté, and he held various Design, Planning and Merchandising positions within the Design and Construction Division for 33 years. He planned over 200 new stores and 125 remodels. His most challenging project he would say was the St. Louis Galleria, at Brentwood Blvd. and Clayton Rd.
Gary was also a long time member of Central Presbyterian Church of Clayton.
Many of his favorite activities offered him the opportunity to be outside including flyfishing and hunting with good friends. Wyoming, Colorado and the Missouri Ozarks were his favorite destinations.
Following the diagnosis of Bronchiectasis, a form of COPD, Mr. Porté became heavily involved with Second Wind Lung Transplant Association. He served in volunteer positions, helping to raise funds for families involved in the costly procedure of Lung Transplant. Within this organization he made many friends from surrounding states that came to Barnes Hospital and St. Louis Children's Hospital. He was always there to add support and advocacy for the patients and the organization.
Mr. Porté is survived by his dear brother Dale R. Porté and his wife Mary Porté, and also his beloved nieces, Heather (Doug) Peterson, Holly (Brian) Burkett, Laura Porté, his nephew Daniel (Sarah) Porté, and 2 grand-nieces and 2 grand-nephews. He also is survived by many close family members, friends from high school, college, and associates of May Department Stores, May Design and Construction, Famous Barr and many consultants.
In lieu of flowers, Gary's family has suggested that memorial donatons may be made to St. Louis Second Wind. Please mail your check made payable to St. Louis Second Wind to Linda Nottestad, 1708 San Simeon Way, Fenton, MO 63026 or on-line at www.secondwindstl.org.
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 Photo Gallery
By Gary Brandenurger
We lost another long standing and treasured friend of our organization, Gary Porte on July 15, 2010. Although Gary did not live to receive his new lungs, he supported as many of our activities as his health allowed. You may have seen Gary driving the golf cart along the run/walk course before, during and after the event. Less visibly but more importantly he worked behind the scenes throughout the months of preparation for many of our lung walks. To honor and remember our dear friend, I uploaded a new set of photos to our Flickr library featuring Gary at various events and meetings. Please click below to view the new set of images: http://www.flickr.com/photos/secondwindstl_pix/sets/72157624624624474/ |
 Treasurer's Report
Because of your generosity Second Wind provided $2,630. in assistance during July. The payments were for lodging in St. Louis, travel expenses, food and medicine.
Honorarium
Lisa and Heron Cunningham for Cecilia Washington
Memorials for June Feltz
Ben and Cheryl Jacks, Jimmie and Joan Justice, George Kaiser, Richard and Dorothy McTague, Thomas and Ora Rosner
Memorials for Stan Henderson
Robert and Rebecca Courtney, Nancy and Gary Noedel
Memorials for Raymond Hartman
John and Lauren Crescenti, Keith Franklin, Amanda and Jason Irwin, Christi Michaelis, Marie Patton, Katherine Roman, Kathy Roman, Phyllis and Raymond Siebert
Memorials for Gary Porte
Reverend and Mrs. Ralph Faisst, Alfred and Mary Anne Long, Pearl Pruetzel, Christine and T.J. Rosner, John and Luray Schaffner, Virginia Stookey and Tom Archer
Memorial for Debbie Ratliff
Jane Ann Sykes
Thank You to Members Who Paid Their Dues
Karrie Clow, Marian Frentzel and Gary Brandenburger
Special Thanks to Members Who Made a Donation with Their Membership Renewal
Karrie Clow, Marian Frentzel and Gary Brandenburger
Matching Gifts
JP Morgan Chase & Co from Jean Belford
Reminder Regarding Matching Donations
Some of our members are affiliated with companies which make matching gifts. In the past 12 months we have received matching donations from Monsanto, Pfizer, and Chase Bank to name a few. Please check with your place of business to see if they will match your donations to St. Louis Second Wind Lung Transplant Association. |
August Transplant Anniversaries
 By Jan and Larry Kwasigroh
Weather wise this summer has been one to leave in the history books and one can only hope that August will be a "kinder and gentler" month. Cooler days would be a fantastic way to start! The following 9 transplant recipients will enjoy August regardless of the weather! We celebrate with you!
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NETWORKING FOR DONATIONS
By Joshua Stegeman
As the 7th Annual Lung Walk rolls around to October, now is the time to begin asking for donations from individuals, relatives, and companies. St. Louis Second Wind relies heavily on your individual donations and those who donate on your behalf. This is especially true in the current economic climate.
One of the easiest ways to request donations is to use electronic media such as email, Facebook, MySpace, or Twitter to contact people that you know and ask for donations. You can provide the website address for them to directly donate. Although this seems informal, it's a great way to contact many people at one time and alert them to your cause.
You can simply state that you are a lung transplant recipient, awaiting a lung transplant, or know someone who benefited from organ donation, and are raising money for St. Louis Second Wind, which collects money to provide financial assistance to people seeking lung transplants. You might mention that the organization provides thousands of dollars of assistance each year, but only through the generous donations of individuals such as yourself.
Another way to contact people is to send personal mailings and ask them to send money directly to you to support the organization or use the website to make a donation. This method is more personal and has the added benefit of allowing you to customize letters. Of course this requires a little more work, but may be effective if you are contacting a few select individuals for donations.
One of the best things to do when asking others for donations is to inquire whether they have affiliations with companies or other networks of people who might be interested in participating in the Lung Walk or giving donations. You may be surprised to learn that a relative works for Boeing, AT&T, or Monsanto and that relative may be able to put you in contact with someone from those companies to inquire about corporate donations or would be willing to pursue such an endeavor on their own. You may have a relative who has kids in college. College campuses are a great source of fundraising and perhaps that college student would be willing to raise funds for St. Louis Second Wind. At the very least, it gets people thinking about potential sources of donations that are beyond the individual donation.
Finally, you can contact local business that you frequent, especially banks and restaurants, and ask about whether they have ways to make donations or provide support through "goodie bag" items. You may be surprised how receptive companies are to help out when they are approached - it's just a matter of someone asking them.
Remember, more than 95% of all donations to St. Louis Second Wind go directly to providing assistance. Because of the low overhead of St. Louis Second Wind, nearly all proceeds raised actually go to helping save people's lives. So, go out there and let people know you're collecting donations for St. Louis Second Wind and find out if they have other outlets that we might explore for further donations!
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 CPF ANNOUNCES DATES FOR EIGHTH ANNUAL NATIONAL PULMONARY FIBROSIS AWARENESS WEEK
2010 Awareness Efforts Set for PF Week Sept. 11-18
The Coalition for Pulmonary Fibrosis (CPF) announced today it has set its 2010 National Pulmonary Fibrosis (PF) Awareness Week for September 11-18, 2010. The primary goals of this year's activity are to ensure passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA), and to raise awareness of PF issues to Members of Congress and in communities nationwide.
Specifically, the CPF is asking its national membership and others affected by PF to take action on the Pulmonary Fibrosis Research Enhancement Act (PFREA), H.R. 1079, by meeting with their Members in person or by emailing, calling or mailing letters to them.
The CPF will celebrate National PF Awareness Week with more than 20 patients and patient advocates on Capitol Hill, and with hundreds of patients and family members reaching out to their own Members in their districts nationwide that week. In 2009, the organization received recognition for its National PF Awareness Week's efforts when it was a finalist for a national advocacy award by PR Week.
The CPF has been working closely with Congressman Brian Baird (D-WA) and Congressman Mike Castle (R-DE) on PFREA, the lead sponsors of the bill. This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.
"It takes each PF patient, each family member and their circle of friends to reach out to Congress and get this bill passed," said Mishka Michon, Chief Executive Officer of the CPF. "Having the voice of the patient community heard loud and clear will make things happen to bring attention and awareness to PF in Washington and beyond."
As part of the National PF Week efforts, there will be a walk in Washington, DC, not far from the Capitol steps, to bring attention and awareness to pulmonary fibrosis and the millions of lives it touches globally. This year, 2010, has been proclaimed international "Year of the Lung" by the American Thoracic Society (ATS) and a coalition of like respiratory societies around the globe. The CPF is partnering with this coalition in a concerted effort to bring attention to lung issues. National PF Week will continue that effort.
This focused effort on the part of the CPF is moving into its eighth year. The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007 to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the years, the CPF and its advocates have met with hundreds of Members of Congress. 127 House Members are now supporters of the current bill.
PF patients, families and those affected by PF can help with 2010 Awareness efforts and help gain passage of the PFREA by joining the CPF's advocacy campaign, Campaign ACT. For further information, please visit the CPF at www.coalitionforpf.org, call us at 888-222-8541, or email us at info@coalitionforpf.org.
Take action today by calling your Representative!
Please contact your House Representative NOW to request their cosponsorship of H.R. 1079 and ask them to support a Congressional hearing on PF!
How to Contact your Representative:
Call the Capitol Switchboard at 1-202-224-3121 and ask for your Representative or give your zipcode if you don't know their name. When you are connected to an office, ask for the Health Legislative Assistant. If you leave a voicemail message, include your name and phone number so they can call you back. Also, it may be helpful to include your city, as well.
Sample phone message:
"I am a constituent and a Pulmonary Fibrosis (patient, family, friend) and I am calling to ask Rep./Sen. ____ to cosponsor the Pulmonary Fibrosis Research Enhancement Act. This bill will create a much needed national patient registry so that scientists and researchers can learn more about the disease as quickly as possible so that treatments may be found. There is currently no FDA approved treatment for PF and as many people die from it each year as breast cancer. Please help us now by signing onto H.R. 1079 and supporting a hearing on PF to Rep. Pallone."
Send an email or letter to your Representative:
Click here to send a message through our simple automated system!
The CPF also encourages you to plan activities in your hometown to raise awareness amongst your friends, family, co-workers, colleagues and neighbors about PF. Come up with a creative way to celebrate PF Week and spread the word about PF!
Thank you for your ongoing support of the Coalition for Pulmonary Fibrosis! Please ask your friends, family, and co-workers to support PF Week, too!
Sincerely,
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Calendar
September 12, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
October 10, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
October 16, 2010, LUNG WALK in Forest Park.
November: National Marrow Awareness Month
November 14, 2:00 PM, Second Sunday Social at Chris' Pancake and Dining.
November: National Donate Life Month
December 12, SECOND WIND CHRISTMAS PARTY
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