Winter MS Connection, Western PA Chapter
2012-2013 Winter MS Connection, Western PA Chapter
Winter 2012 western pennsylvania chapter MS Connection Newsletter INSIDE THIS ISSUE 04 06 08 12 utility assistance program benefits of exercise and wellness What is your ms story? give the gift of time: Volunteer 2 MS connection: WINTER 2012 National Multiple Sclerosis Society Western Pennsylvania Chapter 1501 Reedsdale St., Ste. 105 Pittsburgh, PA 15233 1-800-344-4867 nationalMSsociety.org/PAX Chairman: Douglas Miner, Esq. Chapter President: Anne Mageras Contributed Writing: Chapter Staff Design Layout: Danielle Wertz Editor: Hannah Spear © 2012 National Multiple Sclerosis Society, Western Pennsylvania Chapter Connect with us online: nationalmssociety.org | 1-800-344-4867 newly diagnosed Message from the preSident nmsS strategic response to ms check up on your health #4: “We are leaders in the MS movement, mobilizing millions of people to do something about MS NOW!” It might seem odd that I have chosen to start my Chapter President’s message for this edition of the MS Connection with the 4th NMSS Strategic Response and not the first, but please indulge me for a few paragraphs. As I reflect upon this past Fiscal year, it is more apparent to me NOW than ever, that it is the thousands of volunteers who engaged with the Chapter throughout this past year that continue to drive the success of the Western PA Chapter. Yes, we can celebrate our fiscal stability and I am so grateful to report that we did raise more money than we did last year, which NOW, in this tight economy is, quite remarkable. We, however, could not have done that without the support of so many dedicated volunteers. I have seen them in action in every corner of the 26-county Chapter area, at the Lobsterfest in Altoona, at the Erie Golf Tournament and most recently at the Monster Stomp for MS in New Castle. When I think of my health, multiple sclerosis dominates my thoughts. I run through my inventory of symptoms that are acting up and medications that are causing side effects. Usually, it’s only when I have something like a cold or a stomach virus that it occurs to me that there is more to my physical health than my MS. Follow us: @MSWesternPA NOW, as we begin Fiscal Year 2013, we are positioned to fund MS Research and provide the highest quality of support for those whose lives are affected by MS NOW! Watch us: user/NationalMSSociety On behalf of the Board of Directors (also volunteers), and Chapter staff, I thank you for your tireless commitment to helping create a world free of MS! Unfair as it might seem, people with MS are subject to the same health problems as people who are not living with the disease. We have the same lifestyle and aging issues. We have to consider preventive care for things like heart disease, high blood pressure and cholesterol as we age. Women need to get mammograms and pap smears on a regular basis. We need to keep up with immunizations, as well as visits to dentists and eye doctors. (Visit www.nationalMSsociety.org/preventivecare for preventive care recommendations.) ~ Anne Mageras There are also special risks that we have that are directly or indirectly related to our MS, such as: Western Pennsylvania Chapter nationalMSsociety.org/pax firstname.lastname@example.org Like us: /MSWesternPA I would be remiss in my duties as Chapter President if I did not mention our staff when I talked about volunteers. You may not know that they, too, volunteer their time on many weekends and evenings throughout the year to support those thousands of volunteers who mobilize to do something about MS NOW. 3 • Osteoporosis: People with MS are more likely to have osteoporosis (loss of bone density). This is due to a number of factors, including limited mobility, low levels of vitamin D (which is essential for calcium absorption) and excessive use of corticosteroids (for instance, many Solu-Medrol courses over a short period of time). Your doctor can order a bone scan to test for osteoporosis. • Depression: Depression can be a primary symptom of MS. It can also be indirectly caused by the losses and unpredictability of MS. Your neurologist or general practitioner should be able to refer you to a psychologist or psychiatrist to treat your depression, preferably one with experience treating patients with MS. • Vitamin deficiencies: People with MS tend to have low levels or deficiencies of vitamin D and vitamin B12. Ask your general practitioner about tests and a treatment plan if needed. Make an appointment to see your regular doctor and get the rest of yourself checked out. The last thing that any of us needs is additional health problems that could have been caught early or prevented by taking action.n Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto and www.ms.about.com. Originally published at blog.nationalMSsociety.org. 4 MS connection: WINTER 2012 living with ms utility assistance program CAP (Customer Assistance Programs) • Income requirements • A program set up for making regularly monthly payments, which are less than the current bill, in exchange for continued utility service. • Utilities: Duquesne Light, Penelec, Columbia Gas of Pennsylvania, People Natural Gas, and Equitable Gas. nationalmssociety.org | 1-800-344-4867 Living with MS MS Symptoms and winter weather By Julie Stachowiak, Phd CARES (Customer Assistance Referral and Evaluations Program) LIURP (Low-Income Usage Reduction Program) LIHEAP (Low-Income Home Energy Assistance Program) • • • • Income requirements. The program provides financial assistance to help to pay energy bills. Utilities: Peoples Natural Gas, Columbia Gas of Pennsylvania, and Equitable Gas. This consists of 3 components: Cash Benefits, CRISIS, and Weatherization. Hardship Funds • A program that offers grants for folks that “fall through the cracks” after other resources have been exhausted. • Utilities: Columbia Gas of Pennsylvania Note: Contact Universal Services at 1-800-537-7431 for information and a location of an intake agency near you. n I also know that some people with MS tend to feel more fatigued in winter months. This could be an indirect result of coping with some of the symptoms mentioned above. It could also be that the shorter days and limited sunlight exacerbate depression, which can be a symptom of MS. New data is emerging all the time on the role of vitamin D in MS. Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet by scientific studies. Here are a few tips to help you enjoy the colder months if you are bothered by frigid temperatures: • Soak up sunshine during the warmest part of a sunny winter day to help your body produce vitamin D. • A program that helps families with family emergencies, divorce, unemployment, or medical emergencies. The program provides support and direction. • Utilities: West Penn Power, Duquesne Light, Equitable Gas, Columbia Gas of Pennsylvania, and People Natural Gas. • The program lowers the amount of electricity or gas used each month. A free home weatherization consultation may be available. • Utilities: Duquesne Light, Peoples Natural Gas, Columbia Gas of Pennsylvania, and Equitable Gas. 5 Most of us with multiple sclerosis are heat intolerant to the point of being unable to function outside during peak summer temperatures. But when I asked people with MS on my blog at www.ms.about.com what their MS temperature “limits” were, I was surprised when several people said that the cold wasn’t so great for them, either. Many people complained of increased spasticity in cold weather. Readers mentioned that their limbs “felt like wood” or that their joints ached during lower temperatures. A couple of people also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the gripping feeling around the torso that is caused by a lesion in the spinal cord that results in spasms in the tiny muscles between the ribs.) • Don’t overdo the heat. When I get cold, I tend to take really hot showers. Recently, I got dangerously dizzy during one. Remember, extreme heat is not our friend, either. • Warm yourself from the inside. Drink a hot beverage to take the chill off. Like many other situations that we must navigate through with MS, a little strategic planning of winter activities can help you have some control over symptoms. Put some thought into what you enjoy doing in the winter, take a couple more precautions and get the most out of the cold months. n Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto. Originally published on www.blog.national MSsociety.org. 6 MS connection: WINTER 2012 living with ms Benefits of exercise & wellness MS AND AQUATIC EXERCISE • Improves overall physical function including walking, mobility, flexibility, balance and endurance. • The feeling of decreased weight may lead to a decrease in pain and improvement of other sensory perceptions. These changes may lead to greater ease and range of movement. • Provides a social network. Aquatic groups provide opportunities for social connection and a support system to stay involved in exercise. • Improves mood. Exercise may ease depression and increase self-esteem. Water techniques may also reduce stress and promote relaxation. MS AND YOGA How can you remain active if you can’t get out to your local YMCA, senior center or gym? Try yoga at home! Yoga and Multiple Sclerosis: A Journey to Health and Healing is an excellent guidebook and tool for people with MS, people who undertake yoga on their own, and for all members of the medical and yoga communities Find it at www.demosmedical.com Find dozens of articles, webcasts and tips on exercise for persons with MS at http://www.nationalmssociety.org/ Don't have access to the Internet? Call us to have information mailed to your home. 1-800-FIGHTMS. The Western PA Chapter may have an aquatics or yoga class near you or an exercise video you can borrow from our lending library! Contact us today! n nationalmssociety.org | 1-800-344-4867 advocacy health insurance 101 managing the paperwork BY KAREN MARINER, MSS, MSCIR It can be overwhelming keeping track of health insurance information. However, for people with chronic conditions such as multiple sclerosis, it is crucial to keep track of this information. Four years ago, the chapter launched a new program called the Health Insurance Initiative Project. The purpose is to provide assistance to people with multiple sclerosis in navigating the complicated process of individual health insurance appeals. Health insurance companies deny claims for a variety of reasons. Many times a service is denied because the item or service in question is not covered as part of the benefits plan. It is very important to make sure you have a copy of your benefit plan handy. Insurance companies base their decisions on what your coverage plan allows. You should have received a copy of your benefits plan book when you enrolled in your plan. If not, you can usually find your benefits plan information on your insurance company’s website. Keep your benefits plan information with your insurance paperwork. We are all familiar with the paperwork that is generated when a claim is processed. This paperwork is essential in managing a successful insurance in- 7 quiry or appeal. Paperwork that you will receive includes: • Explanation of benefits or EOB-this is your insurer’s statement detailing how much they will cover and what you owe • Provider Bills/Invoices-you may receive two invoices, an initial invoice and a final invoice. These bills provide detailed information on date of service, type of treatment given and the price for that treatment. It is imperative that you keep all paperwork related to a single claim. Don’t throw anything away. This is your written record, your documentation that will need to be referred to for an appeal. The appeals process can be made much easier if you have all of your health insurance related paperwork in order. Being proactive in managing your paperwork can help reduce stress when an issue arises. Here are some handy tips for keeping your health insurance paperwork organized: • Purchase a heavy duty expanding file. Many are available in numerical, alphabetical or monthly indexes. Use the system that works best for you and your family. • Keep all information, EOB’s, invoices and notes related to the specific claim together by paper clip (don’t staple-you may need to make photocopies and you don’t want to have to keep pulling the staples out) • Purchase a plain notebook or journal (with easy tear out sheets). This is your health records journal. Use this notebook to track all conversations with your provider and health insurance provider. Make sure to date and note who you spoke with in the margins next to your notes Health Insurance 101 Continued on page 8 8 advocacy what is your ms story? Volunteer your story to make a difference for Pennsylvania residents living with multiple sclerosis. The Advocacy Department is collecting stories from people living with MS, family members who have a loved one with MS, event participants and others who want to get involved. What Kind Of Story Are We Looking For? We are looking for a wide range of stories; for people who have struggled to pay their co-pays for their medications, people who have had difficulty using transportation, people who have had issues finding or keeping health care insurance, people who have needed help with bathing, grooming and other life activities and people who have received services from the state or county. Even if you have not experienced any of the above, your story is still valuable. Please reach out to us and we can talk to you about how MS has impacted you personally. How Will Your Story Be Used? The Advocacy Department will use your story in a variety of ways. Often, when we visit with legislators we cannot always bring someone who can speak personally about the impact of MS. We create something called story cards to bring to these meetings. These cards highlight 2-3 sto- MS connection: WINTER 2012 ries of constituents of the legislator. The stories are selected based on what the meeting topic is about, or the policy issue we are working on at the time. We may also use these stories at our fundraising events where legislators might be present. Again, these cards are used to illustrate the personal impact the disease has had on the legislator’s constituents and community. Do You Need To Write Your Own Story? No, we have a volunteer who will arrange a time to interview you to write your story. We simply ask you to sign a photo release form and ask that you email a jpeg photo of yourself to Karen Mariner at the email below. What Do You Need To Do? Contact Karen Mariner, VP of Advocacy, PA & NJ at Karen.Mariner@nmss.org or call 215271-1500 and tell her you want to share your story. You can also go online at http://msactivepa.org/ or http://msactivenj.org/and click on the Share Your Story link at the top. n Health Insurance 101 continued from page 7 from the conversation. Also, always write down the reference number your provider gives you for an on-going issue. You can also go on our website and download a record keeping template. If you do need help with an appeal, the chapter is ready to help. You can find more information on the Health Insurance Appeal Initiative Project by going to our website. n 9 nationalmssociety.org | 1-800-344-4867 money matters handling a high deductible plan by Marcella Durand In a trend that seems to be increasing, many employers will be offering high-deductible health plans to their employees for 2013. A Kaiser Family Foundation 2011 employer survey found a jump to 17 percent of covered workers enrolled in a high-deductible plan, compared to 8 percent in 2009. Basically, high-deductible plans, or HDHPs, include a minimum deductible from $1,250 for an individual to $2,500 for a family. The maximum out-of-pocket amount, which includes the deductible and any coinsurance or copays a member pays, in 2013 is $6,050 for an individual and $12,100 for a family. If your employer is transitioning to one of these plans this fall, here are some things a person with MS or their partner might need to know. The more you know “Get all the information you can about the HDHP your employer is offering,” recommends Kris Erickson, senior health insurance manager at the Society. “Find out what the deductible amount is. Find out what the benefits are after the deductible is met.” Most qualified high-deductible plans, meaning they meet government requirements, are accompanied by Health Savings Accounts, or HSAs. These allow people to pay for or reimburse themselves for medical services with pretax dollars and often include a contribution by the employer. “These are tax free, so contribute as much as possible,” says Erickson. In 2013, the annual maximum contributions are $3,250 for an individual and $6,450 for a family. Individuals who are at least 55 years of age can also contribute a $1,000 “catch-up” contribution. HSA VS. FSA HSAs are not the same as Health Flexible Savings Accounts (FSAs). The law requires that the entire annual FSA election amount be available to an employee up front, but HSA funds are only available as deposits are made to the account. However, it is possible to reimburse yourself for a claim later in the year once more funds have accumulated in your HSA. The maximum annual contributions to an FSA are also different: in 2013, IRS rules will limit them to $2,500 for an individual and $5,000 for a family. In addition, unlike FSAs, there is no “use it or lose it” forfeiture on an HSA and if Money Matters Continued on page 10 10 MS connection: WINTER 2012 Money Matters: Handling a High Deductible Plan Continued from page 9 someone leaves their job, they can take their HSA with them. HSAs also can earn interest. deductible must be met by that individual before the insurance will pay for expenses. For a full list of the “qualified medical expenses” that money stored in your HSA can be used for, visit www.irs.gov/ publications/p502/index.html. In these cases, Erickson recommends looking into patient assistance programs. “If you qualify for assistance, it can make your medication affordable.” For more information, visit www.nationalMSsociety.org/PAPs, or call an MS Navigator® at 1-800-344-4867. Preventive care Under the Affordable Care Act (ACA), private health insurance plans must cover certain pre ventive health services. (For more information on what is covered, visit www.healthcare.gov/prevention.) So, if someone is enrolling in a high- deductible plan, it’s important to know that annual physicals and preventive screenings are covered. For added motivation, medical costs are less expensive if a problem is caught earlier. In addition, vaccinations and checkups for children under a high-deductible family plan are also considered preventive. MS TREATMENT & CARE Much of MS treatment and care is not considered preventive. For instance, MRIs are not considered as such, and the cost of having one will not be covered until one’s deductible is reached. But a person with MS who has a highdeductible plan may be hit hardest by prescription drug costs. With qualified high- deductible family coverage, the deductible for the family has to be reached before any non-preventive medical expenses or prescription drugs are covered. In other words, even if only one person is incurring medical expenses, the full family’s On the plus side, with traditional coverage, deductibles may or may not apply to the outof-pocket maximum and copays never do. Knowing the true out-of-pocket maximum could be an improvement over traditional plans. The way forward The main reason employers are switching to high-deductible plans is lower premiums. “One improvement is that high-deductible plans are less expensive,” says Erickson, and sometimes these savings may be passed on to employees. While not every employer will be switching to a high-deductible plans, it’s a trend to keep an eye on. n Marcella Durand is on the staff of Momentum, the Society’s national magazine. Medicare open enrollment This year’s open enrollment period for Medicare begins Oct. 15 and continues until Dec. 7. To compare drug and health plans, visit www.medicare.gov. 11 nationalmssociety.org | 1-800-344-4867 research Understanding clinical trials People with multiple sclerosis who participate in clinical trials help make new and better therapies possible. The National MS Society has updated information about ongoing clinical trials for MS at w w w. n a t i o n a l M S s o c i e t y. o r g / 2 0 1 2 t r i a l s . There, you can download PDFs on the following specific types of clinical trials: • Trials funded by the National MS Society • Large phase III trials in relapsing-remitting MS • Trials in progressive forms of MS • Trials of symptomatic treatments The U.S. Food and Drug Administration (FDA) requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS. • Phase I: The first step is to determine safety. In a small number of healthy volunteers or people with MS, researchers investigate how the body reacts to a therapy. • Phase II: If the therapy proves to be safe, studies begin to determine a drug’s effectiveness in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled”—that is, the drug is compared with the standard treatment or a placebo. • Phase III: If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectiveness and possible side effects. • Phase IV: These are not required for FDA approval, but might be conducted afterward to assess long-term safety and effectiveness. For more on clinical trials, visit the clinical trials registry created by the National Institutes of Health at www.clinicaltrials.gov.n Originally published in the Upper Midwest Chapter’s MS Connection. A clinical trial glossary Here are a few commonly used terms in clinical trials. BLIND A clinical trial is “blind” if participants are unaware whether they are in the experimental or control group. CONTROL GROUP In many trials one group of participants is given an experimental drug or treatment, while a control group is given either a standard treatment or a placebo. DOUBLE-BLIND STUDY A clinical trial design in which neither participants nor study staff knows which participants are receiving the experimental drug and which are receiving a placebo (or another therapy). RANDOMIZED A study in which participants are randomly (by chance) assigned to one of two or more treatment groups. 12 MS connection: WINTER 2012 chapter news give the gift of time: become a MS Volunteer As 2012 draws to a close, we want to thank everyone who has volunteered during this year’s event season. From registering walkers on a chilly spring morning at Walk MS: Pittsburgh to dishing out pulled pork to soggy cyclists at Bike MS: Cook Forest River Ride, it was a wonderful year! Along this year’s journey our staff met many wonderful people who gave their time to help fight MS. We are proud to be a part of such a wonderful organization with such dedicated volunteers. Nights” and will help increase awareness and help fight MS! Interested volunteers can contact Susan Cook at 412-261-6347 or email@example.com for more information and to sign up! n Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. To register call 1 800 344-4867, or visit nationalMSsociety.org/knowledge. Helping People Live Life Better! Service...Knowledge...Commitment www.blackburnsmed.com dg owle e •Com Kn Servi ent Erie 800.328.9325 it m Pittsburgh 800.472.2440 ce • Contracted with Major Insurances ... PA, OH, NY, and WV Medicaid Direct Delivery and Shipping m Volunteers are a key to any successful nonprofit organization. We are always in need of volunteers for events and office help. This year we are developing a “Call Crusaders” program in which volunteers will welcome new Walk MS and Bike MS participants over the phone to help them through the registration process and help them reach their fundraising goals. These volunteers will be trained specifically for “Fun Standard & Complex Rehab Mobility Equipment and Positioning Devices Equipment Repair Service Center Vast Inventory of Wound - Ostomy - Urological Supplies Oxygen - CPAP/BiPAP - Ventilators - Nebulizers & Neb Medications Accessibility Consultation & Equipment - Stair Lifts - Ramps - Vehicle Lifts Pharmacy Services - Consultations - Certified Immunization Pharmacists Since 1936 Serving Regions of Pennsylvania, Ohio, West Virginia, and New York nationalmssociety.org | 1-800-344-4867 13 14 MS connection: WINTER 2012 Chapter news Holiday gift program: Help spread holiday cheer Suggested items that can be used to fulfill wishes such as: - Sweatshirts (all sizes Men & Women, any design & color) - Decorative Throw Blankets (not necessarily seasonal) - Steeler Items such as T-Shirts and Sweatshirts (all sizes) - Packages of socks - Bottles of Lotion - We need items for both Men & Women. All items must be new and - unused! - Monetary donations Board Member Art DiDonato visits with Don K. during the 2011 Holiday Gift Program We would like to challenge you to make a commitment to this great program and to directly impact a person’s life this holiday season! T he L if t P rofessional Heather Mayer, MS, PT PT / Neurological Specialist The Village at Pittsburgh Mills 724-274-4333 1020 Village Center Drive, Suite N2D 724-274-4303 Tarentum, PA 15084 firstname.lastname@example.org Special Events Each year the NMSS coordinates this program to provide gifts to people living with MS who reside in long term care facilities. Knowing that nursing homes and personal care homes can sometimes be lonely places, we strive to put smiles on the faces of these individuals and let them know that the National MS Society is thinking of them. Our goal is to match each person with MS living in a facility with a gift donor. Last year, we provided gifts to 200 individuals. This year, we hope to increase the number of people who are adopted - so we are asking for your help! AU T H O R IZED D I S T R I B U TO R C H EN E Y S TA I R & W H EEL C H A I R L I F T S B ar r ie r Fre e St air lif t s 275 Cur r y H ollow Road Pit t sb urgh , PA 1523 6 412- 653 - 6 45 0 1 - 8 0 0 -28 8 - 5 6 2 5 FA X 412- 653 - 6 415 15 nationalmssociety.org | 1-800-344-4867 “Laissez les bon temps rouler!” “Let the good times roll” and join us to celebrate the revelry of N’awlins Mardi Gras at the National MS Society’s MSquerade. MSquerade is a unique and exciting Mardi Gras themed fundraiser, to benefit the Western PA Chapter of the National MS Society. There will be beads, masks and Mardi Gras flare galore! Entertainment provided by Erie’s own Dixie Doodlers (a Dixieland Jazz Band) and DJ Shawn Steele of Memories in Motion. Silent & Live Auctions full of fabulous fun! The Concourse of Union Station will provide an evening menu chalk full of traditional Cajun style cuisine such as Bourbon Basted Beef, Bayou Jambalaya & Louisiana Gumbo. The night is full of energy and excitement N’awlins style. We invite you to wear your Mardi Gras best,“fais-do-do” (put the kids to bed) and dance the night away for a great cause. Mark your calendars for Saturday, March 2, 2013! This is an Erie event that can’t be missed. Contact Colleen Szymczak-Gross at 814-464-2900 or emailing email@example.com to learn more! 16 special events LOBSTERFEST The 12th Annual Lobsterfest for MS was held on Friday, September 28, 2012 at the Bavarian Hall in Altoona Pa. Proudly presented by sponsors M&T Bank, Saint Francis University, Hoss’s Steak & Sea House, Forever Broadcasting, along with several other local businesses that MS connection: WINTER 2012 were Table Sponsors, Sand & Sea Sponsors. The attendance was the highest in 5 years with over 475 people coming out to enjoy an evening full of food and fun. The event began with delicious hors d’oeuvres and the choice of a Whole Maine Lobster or Hoss’s fabulous Filet Mignon served by the Hoss’s Family Steak & Sea crew. The event had over 60 fantastic items to bid on in a live and silent auction. Exciting door prizes were given throughout the evening and guests danced to the tunes of DJ Jim Parlier. The Lobsterfest for MS committee worked countless hours to prepare for this exciting event. We are so grateful for the support of Hoss’s Family Steak & Sea House employees and over 20 other volunteers that help make this event a huge success. This year we were able to raise over $50,000.00 to help us in our mission, to create a world free of MS. n special events Celebrating the 10th annual cook forest river ride More than just a ride. Bike MS. The Bike MS: 2012 Cook Forest River Ride, held on Saturday, September 22 was a huge success. This year we celebrated the 10th Anniversary of this great event and it was the largest, most successful one yet! We registered over 600 cyclists and raised over $100,000. We also had wonderful local community support from businesses, police, fire police, park officials and volunteers. Thanks to all who participated and helped to make it such a huge success. MARK YOUR CALENDARS FOR THE 2013 BIKE MS SERIES! Bike MS: Escape to the Lake, June 8 – 9, 2013 Bike MS: Keystone Country Ride, July 20 – 21, 2013 Bike MS: Cook Forest River Ride, September 21, 2013 special events The Bar challenge is back! Our 2012 Allegheny Bar Challenge is on!! We have over 30 Allegheny restaurants and bars participating this year by selling our signature football cards, black and gold beads and planning events. The Bar Challenge gives the restaurant and bar industry Southwest Bar Challenge a chance to give back to their community to help create a world Top Fundraisers free of MS. Our goal is to encourage participating establishments to raise critical funds through organizing fun and creative events. The Bar Challenge Campaign offers each restaurant and bar the tools to become a top fundraiser in the industry. One of our participating restaurants, Primanti Brothers, are annual participants and they’ve raised close to $50,000 to date for the Society. Each establishment hosts their own events and promotions - the more creative the better! To register your favorite bar or restaurant contact Susan Cook, 412-261-6347 or firstname.lastname@example.org 17 nationalmssociety.org | 1-800-344-4867 Learn More At: BikeMSWesternPA.org special events diy fundraising do it yourself Do- it-Yourself fundraising gives people an outlet to create their own fundraising program or event and see their ideas come to life! Then National MS Society, Western PA Chapter has a website devoted to the DIY’ers in our region. This site includes helpful resources to help you kick off a DIY activity and learn from others who are hosting their own. Activities can include golf tournaments, dinner parties, bake sales, endurance events and more! We can provide marketing materials, direction and advice on how to build a successful event from the ground up. All it takes is a little inspiration, hard work and a good attitude to help raise money to fight MS. SO GET STARTED TODAY, JOIN THE MOVEMENT®, AND TOGETHER WE CAN ALL HELP TO CREATE A WORLD FREE OF MS! 18 special events be inspired. get connected. walk ms. Jump Start the 2013 Walk MS Season TODAY! We are happy to announce that registration for Walk MS: 2013 has officially opened! Walk MS is more than just a fundraising event, it’s a celebration for the entire community. The event itself creates a hope-filled and fun atmosphere for everyone affected by multiple sclerosis while generating a greater awareness of MS in the public at large. Families are drawn closer together, co-workers are united for a greater good, and people gain a better understanding of what MS is and how close we are coming to achieving a world free of this disease. Register now, connect with other and start fundraising today! You’ll move. You’ll be moved. The 2013 Walk MS Campaign takes place in April and May throughout Western PA. Visit walkmswesternpa.org to register for a Walk MS near you! For questions please contact Hannah Spear at 412-261-6347 or email Hannah.Spear@nmss.org MS connection: WINTER 2012 Sunday, April 21, 2013 Pittsburgh - Point State Park Hollidaysburg - Hollidaysburg Jr. High School Bedford - Shawnee State Park Greensburg - Kirk S. Nevin Arena Saturday, April 27, 2013 Uniontown (NEW) - Penn State Fayette Sunday, April 28, 2013 Grove City - Grove City Memorial Park *** New date & location Washington - Tanger Outlets Beaver - Beaver Area High School Dubois - Treasure Lake, Cayman Landing Indiana - Indiana Area High School Saturday, May 4, 2013 Erie - Presque Isle Park, Cookhouse Pavilion Sunday, May 5, 2013 Franklin (Oil Region) - Franklin’s Bandstand Park Johnstown - Pitt Johnstown Saturday, May 18, 2013 Bradford - Pitt Bradford’s Blaisdell Hall Sunday, May 19, 2013 Warren - Betts Park Meadville - Roche Park 19 nationalmssociety.org | 1-800-344-4867 Upcoming Program 2013 Links Series Register for this teleconference series at nationalmssociety.org/pax 9 OPPORTUNITIES TO LEARN MORE ABOUT MS FROM THE COMFORT OF YOUR HOME We are pleased to present a series of teleconferences for clients with MS and their families entitled “LINKS.” Whether you just received a diagnosis of MS or have been living with it for a long time--the goal of this series is to “link” you with information and tips on how to maintain your quality of life in the years ahead. This 9-week series will run Tuesday nights (7-8 pm) from April 2 through May 28, 2013. Has Multiple Sclerosis (MS) Affected You? Join us for this free and interactive live event for people with MS, their families and care partners Tues, October 23rd Interact with a leading MS WATCH YOUR MAIL FOR A SPECIAL POSTCARD WITH ALL THE DETAILS. Space is limited so RESERVE YOUR SPOT TODAY! expert and others living with MS ONLINE: ampyraseminars.com Learn about a therapeutic option PHONE: for MS Location: Walnut Grill Mt Lebanon Address: 660 Washington Road Mt.. Lebanon, PA 15228 Date: Tuesday, October 23rd Time: 6:30 pm 1-800-397-8082 Speaker Dr. Stuart Silverman, MD Associates in Neurology & Susan Kushner Physical Therapist Slippery Rock University Complimentary Food Sponsored by Acorda Therapeutics®, Inc. AMP601 Paid Advertisement TOPICS (subject to change): • Complementary & Alternative Therapy • Relapses/Exacerbations, Care, and Recovery • Finding the Right Care & Using Your Appointment to the Fullest • How to Hire Help at Home • Tips & Gadgets • Fall Prevention • Nutrition-Healthy Eating & Wellness • Hidden Effects of MS: Financial Survivability • Clinical Trials & MS Research Update Mt. Lebanon, PA CALL TO ACTION: Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms. DISCLAIMER: Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such If you or someone you know has names appear here solely because MS, please contact the National MS they are considered valuable informaSociety at nationalMSsociety.org or tion. The Society assumes no liability 1-800-344 -4867 to learn more. for the use or contents of any product or service mentioned. 20 MS connection: WINTER 2012 special events 10th annual MS monster Stomp A ghoulishly good time was had by all at the 10th annual MS Monster Stomp, Saturday October 20th 2012 at Neshannock High School Stadium in New Castle, PA. Families, friends and the community of New Castle came together to walk, run or “goblin trot” to support those with MS. The MS Monster Stomp is a charity race for all ages to benefit The National MS Society. The proceeds of the event assist persons with MS and their families with medical equipment, in-home services, respire for care-givers, education, self-help groups and funding for research to find the cause and cure for MS. The MS Monster stomp is an effort to raise awareness about the disease and its impact on those close to home. We are happy to report that due to generosity of so many MS Monster Stomp participants and sponsors, the 2012 Monster Stomp for MS raised over $20,000! Contact Susan Cook, 412-261-6347 or email@example.com for more information. special events Return to romance The National MS Society is proud to present our fourth Annual Return to Romance for MS on Saturday February 9th, 2013 at the Calvin House in Duncansville, PA. This event is an evening of elegance with dinner, dancing, silent auction and more. For more information please email Sharon.Okeiff@nmss.org or call 814-696-1017. nationalmssociety.org | 1-800-344-4867 21 Ways to give volunteering: the experience of a lifetime By Helen marie russon Since my diagnosis with MS in 1997, the Society has been my rock — providing me with information and community resources. It only makes sense that I would want to give something back. In doing so, I have gained at least as much as I have (hopefully!) given. One way I’ve volunteered is by participating in community projects such as giving people rides to their doctors or teaching someone how to use a computer. Joining my chapter’s Talk MS Speakers Bureau was another excellent way to volunteer. In speaking to various groups, I’ve helped to educate the public about what MS is — and is not. When I feel less energetic, I contribute in more sedentary ways. My chapter can always use someone to stuff envelopes, put in a shift at the front desk, or help with updating volunteer lists. And it goes without saying that the “office atmosphere” is far from traditional! n Helen Marie Russon is a volunteer at the Oregon chapter. We need YOU to volunteer Volunteering for the Society can be the experience of a lifetime - and we need your experience. More than 500,000 volunteer positions keep the Society running. Visit our Volunteer page to register and let us know your interests, skills and availability. Or call 1-800-344-4867 to speak to a volunteer coordinator. Here is a sampling of ways to volunteer. • Service Project Volunteer Team: Help organize projects such as painting, minor repairs and yard work to help people living with MS in your area. • Talk MS Speakers Bureau or MS Ambassadors: Raise awareness about MS and the Society. Represent the chapter at health fairs. Make presentations to community groups. Seek out opportunities to speak. Call us! • Office Projects and Front Desk Volunteers: Help with mailings, data entry and other office tasks. Assist people when they visit our office. • Fundraising Events: Walk MS and Bike MS events run on volunteer muscle and expertise to deliver supplies, prepare and serve food to hungry participants, or cheer people on at the finish line. Call us today to take part! 22 MS connection: WINTER 2012 ways to give Six tips for year-End giving Give to a cause you believe in while making your tax bite smaller by donating to the Society before December 31. These suggestions can help your gift be a successful one. Talk to your accountant Charitable gifts made now may reduce what you owe for 2012. Talk to an accountant or financial advisor who can help you determine the full impact of your gift. Don’t wait Get started now to make the best of 2012 tax legislation. For example, the extended charitable IRA legislation allows people aged 70½ or older to transfer lifetime gifts of up to $100,000 tax free using funds from their IRAs. This opportunity is only available through December 31, 2012. Review your portfolio If you have held appreciated stocks for more than a year, avoid the capital gains tax by giving the stock to the Society—and get a deduction for the full value of the stock. Stock gifts need to be transferred into the Society’s account by close of business December 31 for them to count in the tax year. For details, visit www.nationalMSsociety.org/giftsofstock. Consider an annuity A charitable gift annuity provides you with current tax benefits and guaranteed payments for life, but it also allows you to provide for meaningful future gifts to support people living with ways to give your donation makes a difference MS. Call the Society’s National Individual Giving Office at 1-800-923-7727 or email firstname.lastname@example.org for more information. We make it very easy to weigh the options. Stick with organizations you support - like the Society! According to www.charitynavigator. com, dividing money among many nonprofits diminishes its impact as each charity will spend a percentage on fundraising and overhead expenses. An easy way to make a lasting impact is to name the Society as a full or partial beneficiary of your retirement plan or life insurance policy. Make a long-term commitment Be a partner in the Society’s efforts to end MS. Please consider a gift in your living will or living trust, which will help to support our mission well into the future. We can only succeed with your continuing support. For more information on ways to give to the Society, call us at 1-800-344-4867. 23 nationalmssociety.org | 1-800-344-4867 Your gift makes a difference! Your contribution supports local programs and services and MS Research. Please be part of the movement to create a world free of MS! Gift Cost Box of candy and package of socks for nursing home resident with MS $10.00 Bathroom grab bag $15.00 Book of Access tickets $25.00 Incontinence supplies for one month $50.00 Kids Camp bus ticket $70.00 Round trip wheel chair transport to MS Center $75.00 Cooling vest combo pack: cooling packs, wrist and neck wraps $100.00 One week emergency shelter for pet at Animal Friends $150.00 Yoga classes for 12 weeks $200.00 One window unit air conditioner $250.00 Light-weight travel wheelchair $300.00 One tank of heating fuel $400.00 Qty Total Totals: Please make checks payable to the National MS Society, or complete the information below needed to process your credit card payment. All gifts are tax deductible. Return your form with payment to: 1501 Reedsdale Street, Suite 105, Pittsburgh, PA 15233 Name on Card: ______________________________ Phone#: ____________________________ Mailing Address: _____________________________ Email Address: _______________________ Circle one: VISA Master Card Card #: ______________________________ Exp. Date:_____________ CVV #: _____________ Total Charged: _______________ Signature: ___________________________________ National MS Society: Western Pennsylvania Chapter 1501 Reedsdale Street, Suite 105, Pittsburgh, PA 15233 412.261.6347 NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Pittsburgh, PA Permit # 3047 Western PA Chapter 1501 Reedsdale St., Ste. 105 Pittsburgh, PA 15233 To register for any of the calls in the Employment Teleconference Series call the National MS Society at 1-800-344-4867 at least one week prior to the call(s) in which you would like to participate.