THE MICHIGAN INSIDER Your educational and informative connection to the Scleroderma Foundation Michigan Chapter SUMMER EDITION 2014

Stampeding toward a cure Despite a chilly downpour of hand to provide entertainment Perhaps the most impressive rain, 488 walkers and 283 and take photographs. Tookles item able to be bid on was a runners showed their support the clown was also in 24 x 36 inch framed print of for the Scleroderma attendance painting faces, and the 2014 Winter Class at Foundation Michigan Chapter attendees were able to take Michigan Stadium taken at this year’s Stampede part in a scavenger hunt. from the air by aerial Scleroderma event June 8 at Former Red Wings star and photographer Dale Fisher. the Detroit Zoo. VP of the Alumni Association Fisher was one of only two John Ogrodnick was offering photographers to capture the They braved more than just photos and autographs. action of the Winter Class fatigue and runner’s cramps as from the air January 1. they raced toward the finish A tin can raffle and live auction line dripping with chilly rainfall provided exciting prizes to be It all added up to an Team Mooneyham brings more than 50 friends rather than sweat. If it bothered and family to the event! won as well. Prizes for the tin afternoon of fun, where any of them, you wouldn’t can raffle included a photo of many walked away with know. These runners and Detroit Red Wing Pavel great prizes and souvenirs, The final donation tally will continue to be walkers were on a mission to Datsyuk, autographed by the but most of all feeling counted into the fall. It all combined for a cure scleroderma, and they man himself, and an accomplished that so many smashing success, as the event saw 300 wouldn’t be deterred. autographed Joique Bell mini came together to help the more participants than last year, including helmet. The live auction foundation meet its 78 walk-ups. And don’t forget the 121 featured prizes such as a commitments of support, soaked volunteers who helped Detroit Tigers ticket package, a education and research. The fun at this year’s event didn’t end at out with registration, setup, Cedar Point ticket package Funds raised from the event the finish line. Back at the zoo pavilion, photography, administered the and a team photo of the 2013- will help the Chapter carry music, drinks and food awaited. Mascots walks and runs, and stuck 14 Detroit Red Wings, out its mission, programs Roary and Sparty, from the Detroit Lions around to clean up. autographed by all the players. and services. and Michigan State University, were on

Awareness key to early diagnosis IN THIS While educating friends, neighbors and For many, it can lead to harmful these types of relatives about scleroderma is one misdiagnosis. “It’s important for you to things, so you’ve got battle, the fight to increase awareness know that, sometimes, what might be the prior knowledge of EDITION among doctors is another. In May, the treatment for the first diagnosis you think this illness and a Michigan Chapter’s scleroderma of can be devastating,” said Anita Devine. personal face to IN THE NEWS-2 patients joined with patients of other attach to it. If you’re autoimmune diseases to hold panel in a position as a SAVE THE DATE-3 discussions at Wayne State University in doctor where you Detroit. Close to 500 medical students have a patient, it’s SMILES TO GO-4 listened to patients discuss scleroderma going to be on your and their experiences. A 20-year mind that this could SUPPORT GROUPS-5 collaboration of autoimmune nonprofits be what’s going on,” FEEL GOOD FOODS-5 has educated more than 100,000 said Eric Hodson. second and third-year medical students. MEMBERSHIP INFO-6 The Michigan This education is crucial for future Chapter is looking to doctors and patients, as lack of expand this program awareness among doctors can add to other hospitals years of painful uncertainty before a [Anita Devine, Nancy Stephens, Erik Hodson, within the state in patient receives a proper diagnosis. Annie Valle, Ilene Michalski] 2015.

“They didn’t know what I had. That “We’re looking at three to five years to get concerned me the most. It scared me a complete diagnosis on average. the most that they didn’t know what it Sometimes it can take up to 10 years. was,” said Annie Valle. That’s one of the reasons why we do

The perfect pillow Summer 2014 There’s nothing quite like the can be filled to suit each will leave after some time. feel of the perfect pillow. When sleeper’s need–more for side your neck, head and spine are sleepers and less for back and While it’s important not be properly supported, you’re stomach sleepers. Down scammed by promises of a life- likely to get an uninterrupted, pillows can last up to 10 years changing pillow, such as you’d more fulfilling night of rest. But and are very breathable, see on a late night infomercial, how do you go about choosing increasing the comfort. don’t let money get in the way such a pillow? of the best pillow for you. A few Latex pillows, made from the extra bucks for better, more It’s best to choose your pillow sap of rubber trees, are very restful sleep can go a long way based on the position you resilient and elastic, resistant in improving numerous aspects sleep. Side sleepers need a to bacteria and dust mites, and of your life. But do your firm pillow to support the neck are a great choice for those research first. Look at reviews and head. Back sleepers need who suffer from allergies. and see what type of warranty THE MICHIGAN INSIDER a medium to firm pillow to is offered with the pillow you {Published by the MI Chapter} cushion their head, while A memory foam pillow molds decide to purchase, particularly stomach sleepers should look itself to your body shape, if it’s expensive. EXECUTIVE DIRECTOR to a soft pillow for a good night which may help with problems Laura Dyas, L.S.W., L.P.C., M.A. of sleep. such as jaw or neck tension. These pillows, however, can “I love sleep. My life has the BOARD OF DIRECTORS Material matters too. Down make you hot, as the material Paul Rybicki, President pillows, made from the inner doesn’t breath. They may also tendency to fall apart when I’m Meredith Jacques, ESQ, VP plumage of ducks and geese, have a funny odor at first that awake, you know?” Ilene Michalski, Treasurer Carol Baldwin, Secretary -Ernest Hemingway Jennifer Diven Linda Douglas Chad Downing Mary Garrity Put the sheep to bed Alexandria Gaynier, CPA If left unattended, insomnia can cause in hand. For some, it’s a tool to relax. On just Laura Hunter depression, anxiety, a compromised immune about every smart phone, free apps are Shahein Rajaee system and numerous other health issues. available specifically to help people sleep. Kathryn Rehrauer These symptoms tend to increase the These apps have recorded sounds ranging Grant Welmers frequency and severity of insomnia, creating a from an orchestra and rain pattering on the roof MEDICAL ADVISORY BOARD cycle of sleeplessness that can ravage the to the hum of a vacuum cleaner. These sounds Iris B. Daniels, M.D. mind and body. According to the Centers for can be combined to create, or recreate, times Carol A. Beals-Kruger, M.D. Disease Control, an estimated 50 to 70 million of relaxation, such as summers spent on the Dinesh Khanna, M.B.B.S., M.Sc Americans suffer from sleep disorders, beach or napping on a rainy day as a kid. Henry W. Lim, M.D. including insomnia, whether acute or chronic. Richard W. Martin, M.D. Everybody knows the obvious remedies, such The bedtime ritual Vallerie V. McLaughlin, M.D. as moving the TV out of the bedroom. Here’s a Create a ritual that signals it’s time for some Tammy Clark Ojo, M.D. handful of insomnia curing tips you may not shuteye. A warm bath 30 minutes before Rene Peleman, M.D. have considered: bedtime may work. For some, reading a book Melvyn Rubenfire, M.D. does the trick. For others, clearing the mind of Mark Saidman, D.D.S. Herbal remedies the day’s clutter by writing in a journal or Elena Schiopu, M.D. Herbs such as lavender, valerian, jasmine and meditating will settle the mind and stop those Robert C. Schwyn, M.D., Ph.D. Dr. Laal Zada, D.P.M. lemon balm can help relax the body and mind thoughts from running wild and stopping sleep. when used as teas, in warm baths or as 23999 Telegraph Road aromatherapy. Something as simple as Southfield, MI 48033 spritzing your pillow with a lavender scent can If it’s not happening, don’t force it p. 248.595.8526 f. 248.595.8586 help significantly. Tossing and turning for hours on end won’t help

patient help line. 800.716.6554 you sleep. In fact, it more than likely will do the www.scleroderma.org/michigan opposite. Forcing yourself to lie in bed in hopes [email protected] Avoid clutter and work in the bedroom of falling asleep creates anxiety associated with Your bedroom should be a sanctuary. Avoid the bed, preventing you from relaxing. After

working on or reading any work-related about 20 minutes, if it’s not happening, get out materials in bed. Make the bed a sleep only of bed and go somewhere else until you feel zone. When you hit the sheets, it should signal sleepy again. your body that it’s time for sleep. Rid your bedroom surroundings of clutter to create a more relaxed, stress-free environment. Get some sun Get as much natural light during the day as you can and as little artificial light at night. This will Combine guided imagery and relaxing optimize your body’s production of the melodies melatonin hormone, which regulates the For good or ill, sleep and sound often go hand sleep/wake schedule.

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Summer 2014 FEEL GOOD FOODS SAVE THE DATE

HOW TO DANCE IN THE

Gluten-free pumpkin pancakes RAIN CONFERENCE SATURDAY, SEPTEMBER 6

Ramada Plaza 3333 28th Street SE Grand Rapids, MI 49512

A full day seminar for the autoimmune community beginning at 9 a.m. $30 per person – includes a sit down lunch, conference materials and recyclable tote.

Register at: www.scleroderma.org/michigan

HIDEOUS HOLIDAY SWEATER RUN SATURDAY, NOVEMBER 8

Kensington Metropark 5K AND 13K RUN Looking to add some seasonal flavor to your breakfast without that pesky Register at: gluten? Look no further than these light, spiced pumpkin pancakes. hideousholidaysweaterrun.com {Prep: 10 min. Cook: 15 min.} LET’S TALK SCLERODERMA C ONFERENCE Ingredients: • 1 1/2 teaspoons 2. In a separate bowl, mix SATURDAY, APRIL 25, 2015 cinnamon together gluten-free

• 1 1/2 cups canned light • 1 teaspoon allspice flour, sugar, baking coconut milk OR milk Livonia, MI • 1/4 teaspoon guar gum powder, baking soda, • 1 cup canned pumpkin OR xanthan gum A half-day seminar for scleroderma (OMIT if you are using spices, salt and puree (not pre- patients. seasoned / sweetened a GF all-purpose flour xanthan or guar gum. pumpkin pie filling) mix that contains xanthan or guar gum) 3. Combine dry and wet • 3 eggs Extra oil for cooking ingredients. • 2 tablespoons light • STAMPEDE SCLERODERMA pancakes olive oil OR canola oil SUNDAY, JUNE 7, 2015 For Apple Pumpkin 4. Use ½ teaspoon of • 2 tablespoons apple • cooking oil in a heavy cider vinegar Gluten-Free Pancakes - 1 medium, cored, Royal Oak, MI 1 teaspoon vanilla skillet over medium • finely chopped apple 5K/10K RUN AND WALK at the Detroit extract heat. Pour ¼ cup For Pecan Pumpkin • Zoo. • 2 cups gluten-free all Gluten-Free Pancakes pancake batter into purpose flour - 1 cup chopped skillet and shape into (preferably without pecans pancake. You should added xanthan or guar DOWNRIVER WALK get about 12 4-inch gum) AUGUST 2015 Directions: pancakes. • 4 tablespoons brown sugar 1. Beat together milk, For additional seasonal Taylor, MI • 1/2 teaspoon salt Watch for additional details about the • 2 teaspoons gluten- pumpkin, eggs, oil, flavor, add about 1 free baking powder vinegar and vanilla in tablespoon of chopped Michigan Chapter’s second statewide walk • 1 teaspoon baking medium mixing bowl apples or pecans on top of being held in the community of Taylor. soda until smooth and each pancake at the

creamy. beginning of cooking.

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LETTER FROM LAURA Summer 2014 {Scleroderma Foundation Michigan Chapter Director}

“Start where you are. Use what you have. Do what you can.” – Arthur Ashe

In 1979, the Michigan Chapter started with grassroots efforts, hard The long-term objective is to demonstrate to our membership work and dedication. Many have worked tirelessly over the past the impact the Scleroderma Foundation Michigan Chapter has thirty-five years to help the Chapter create a solid foundation, on our state with a sense of transparency and proven results. which we continue to work from today. To obtain our strategic goals and long-term objectives, the Much has changed in the nonprofit world. Grant funding and Chapter needs YOU! We cannot do this alone. We need the corporate marketing dollars have begun to dry up, and fewer membership to attend events, support group meetings and individuals are considering planned giving as a way to contribute conferences. These fundraisers and educational experiences to their favorite nonprofits. Businesses more often sponsor the are planned to meet the needs of scleroderma and overlapping larger charities that provide them with the most visibility and media autoimmune patients and family members. Every member of coverage. our database must take an active role in the Chapter on some level. Volunteering, donating, attendance, recruiting sponsors Despite such negative trends, the Michigan Chapter has seen for events–these are ways that each of YOU can assist the tremendous growth over the past three to five years. The Chapter Chapter. Businesses are more likely to donate to a cause if has increased sponsorships, created new relationships in the they know it is important to one of their employees. Sponsors com munity and made a footprint creating awareness in the state. will support an event because YOU helped to educate them Tho ugh the current economic climate may present challenges, the about scleroderma. Chapter has used the resources they have–even finding a way to create a new event that has not only increased awareness for If you do not live near our current events, start one of your scleroderma, but has also become a new revenue source. The own. It is not difficult. Ask friends, co-workers and family to join Chapter increased attendance at the Detroit Zoo event this year, you for a walk around your favorite park. Have each person despite the two largest statewide runs being held the previous bring pledges. Ask a party store or drug store you frequent for day. The Chapter also surpassed the industry standard for social a case or two of water. Have friends bake cookies as a treat, media presence this past year, thanks to our relationship with and you have a fundraiser! If you do this every year, friends will Brogan & Partners. bring friends and it will grow. This is how other Chapters have grown to have 13 walks in their states. Families have come All of these accomplishments were achieved with a commitment to forward to start their own walks, runs, bikeathons, spaghetti serve the needs of the scleroderma community in Michigan. The dinners, wine party evenings, bowlathons and other events. Chapter is also focused on metrics, results and accountability for The Michigan Chapter needs our membership to come forward every dollar spent and invested. To achieve this goal, the Chapter and support the vision for growth. It all begins with YOU! recruited members onto the board of directors to increase, strengthen and diversify board membership. These members all The growth of the chapter is not a 5K run, it is not a 10K run–it have specific skills and talents that enrich and enhance the board. is a full marathon! I sincerely hope you will join the Board of They are community leaders with a demonstrated track record of Directors and I, as together, we set our sights on the finish line. delivering on their investment. Staff and board members are Truly, we shall do what we can to complete this race working hard to move the mission forward and are actively successfully! seeking donors who want to invest in the Chapter and its long- term strategic goals, which are: If you would like more information about how you can start your own walk, run or third party event, go to: 1. Create more awareness for scleroderma among medical www.scleroderma.org/michigan or contact me directly at professionals in the state of Michigan. [email protected] 2. Increase awareness among media, community leaders, individuals and potential sponsors regarding Enjoy the rest of your summer! scleroderma. Laura Dyas 3. Increase the educational programs the chapter offers and the geographical range of programming within the state. 4. Increase contributions of additional funds to the national Scleroderma Foundation’s peer reviewed medical research program.

THERE IS NO CURE FOR SCLERODERMA. TOGETHER, WE CAN CHANGE THAT.

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Summer 2014 LIVING WITH SCLERODERMA

Gluten free apps Switching to, or maintaining, a gluten- free diet can be tough. You might feel deprived by the restrictions of your diet. The foods you love may now seem out of reach. Even going to a restaurant can be a hassle now that you’re gluten-free.

Never fear, though, technology is here with a solution.

Dozens of apps are available for your smart phone that can make your gluten-free life as easy as it should be.

In That Gluten Free? - $7.99 This app can save you from all of your gluten-free grocery shopping struggles. Essentially an encyclopedia for gluten-free foods, it contains more than 30,000 manufacturer-verified gluten-free products from more than 1,140 brands. Regular product “The number one benefit of information technology is that it updates occur about monthly. There empowers people to do what they want to do.” –Steve Ballmer is also a restaurant version of the app.

Easy Gluten Free Recipes - $3.99 Containing more than 100 gluten-free Mind Your Apps recipes, this app makes planning meals easy. The app lists specific We have a tendency to focus With the distractions of a varying in length from 3 to 30 brand names for gluten-free products, on dozens of different smartphone and tablet in minutes. Seven different making grocery shopping for the thoughts while performing every hand, this purposeful meditation categories are recipes that much easier. All recipes are put into categories of breakfast, any number of different tasks. awareness seems more available to choose from to fit lunch, dinner, snacks and dessert. These thoughts are often difficult than ever. You may your needs. Other features be asking, “Is there an app for include notifications to remind Most recipes only take 15 minutes to pushed aside or buried as prepare and there is even a list of distractions. Mindfulness that?” It’s a good thing you you when it’s time to meditate asked. There are plenty of and to help you stay and gluten-free frozen food. meditation is the practice of doing the opposite. Instead of apps for that. focus in the moment. Gluten Free Restaurant Items - ignoring distracting thoughts $2.99 Simply Being - $0.99 – 4 ½ Mindfulness Meditation - and feelings, mindfulness For those with a culinary deficiency, meditation is about stars $1.99 – 4 stars this app is a dream come true. Users acknowledging and Simply Being guides you step Mindfulness Meditation can find gluten-free food options from processing them to gain by step through meditations includes 5, 10, 15, 20, 30 and more than 150 restaurant chains, insight and awareness. in length of 5, 10, 15 or 20 even 40-minute guided including even fast food. The app also minutes with or without music meditations. A checklist within finds restaurants with gluten-free During mindfulness or nature sounds. It also the app will help you get the options within a 30-mile radius of the meditation, each thought is allows music or nature most out of each meditation user’s location. Updates are free given sole attention. As the sounds to be listened to session. A 10-minute deep when more restaurants are added. mind begins to wander, the without the guiding voice. The relaxation exercise that will Any of these apps, or a combination idea is to pull the thought app provides instructions to help you unwind before you support and/or enhance your meditate is also included. of them, will make living a gluten-free back and focus on it, process lifestyle far easier. Being gluten-free it, mull it over. This can not meditation. These are just a few of the doesn’t have to mean grocery only improve your ability to shopping is a nightmare or going out process emotions, but can The Mindfulness App - apps out there. Test a few out $1.99 – 5 stars and see which works best for to eat is an impossible task. also help you make better decisions with a clearer mind. The Mindfulness App you. contains guided meditations 5

LIVING WITH SCLERODERMA Summer 2014

Adaptive tools With limited arm, shoulder or With a few screws, the to hold onto whatever it’s are three stainless steel bowls. hand movement, completing Doorknob Extender turns a attached to. The bowls are a fine grater and everyday tasks such as writing doorknob into a door lever so slicer, a coarse grater and a check, cutting wrapping less pressure is needed to turn Super Long Flexible Drinking collecting bowl. All are secured paper or chopping ingredients the doorknob while adding Straws - in place while being used. The for dinner can become more extra leverage for those with $12.95 (Package of 10) board, made of Rubberwood, is than a hassle. Many of these limited hand function. The Washable and reusable, these also mounted on non-slip feet. problems can be solved by extension measures five 28 inch long straws provide simply having the proper tools, inches. flexibility and stability for easier Also available: some of which include: hands free drinking. Three Large button universal remote Lamp Switch Enlarger - flexible sections allow the straw Hands free playing card Mounted Table Top Scissors $5.95 (package of 2) to be adjusted to almost any holders - $29.95 The Lamp Switch Enlargers are angle. They can be cut to any Book holder These scissors are designed larger, triangle shaped knobs desired length with scissors. Hand to Hand Mug for users with limited strength that fit over normal lamp and control. Paper is pushed switches to create a switch that Multi-Purpose Food All of these items and many along a plastic base and cut by can be more easily grasped. Preparation Board - more can be found at depressing a T shaped lever. $99.95 www.arthritissupplies.com, Universal Hand Clip - $6.95 Designed for those with weak Type Aid - $20.95 The Universal Hand Clip hands or poor hand control, this The Type Aid is designed to attaches to just about anything, food preparation board assists help those with limited from phones to cups to hair in peeling, slicing and grating. functional hand skills accurately brushes. Once attached, the Four food spikes sit atop a depress keys on keyboards, spring action clip fits securely reversible lid to hold food in typewriters, adding machines, over the hand, requiring no grip place, while stored under lid Heated gloves calculators and telephones, in addition to other devices with Convenient and genuine push button keys. solutions for keeping your hands warm can be few and far Steady Write Pen - $9.95 (Bag between, especially when out of 3 pen refills $3.95) and about. Several companies Made to smooth out shaky or are making battery heated poor handwriting, the Steady mittens, which may be a very Write Pen features an attached real solution. base, griped between the knuckles. Gerbing, a company specializing in heated clothing, makes a pair Body Care Long Handled of battery heated mittens with a Back Scrubber - $23.95 charge that can last up to 8 This body scrubber enables hours. The gloves, designed for users to reach all over their the coldest and harshest back with an ergonomically temperatures, reach a maximum designed curved handle over temperature of 135F. two feet long. Carefully designed for balance to The gloves use a micro-wire minimize stress on joints, the system that is durable and scrubber features a nylon efficient, as it uses intertwined washcloth with polythene lining micro-sized stainless steel fibers that doesn’t absorb water, so that evenly heat the gloves. The that the balance is maintained gloves are also waterproof. even when wet. For $179.99 through Cube It Food Chopper - thewarmingstore.com, you can $12.95 get a pair of these heated The Cube It Food Chopper mittens, two rechargeable chops vegetables, fruits, meats lithium-ion batteries and a battery and cheeses quickly and charger. Electrical components uniformly without the hassle of come with a lifetime warranty a knife. and non-electrical components come with a year warranty. Extra Doorknob Extender - batteries and extended-life $18.95 (package of 2) batteries are available as well.

6 LIVING WITH SCLERODERMA Summer 2014

Go yoga The benefits of yoga go beyond simply improving the strength and flexibility of the body. Stress relief, weight loss, improved immunity and even a greater awareness of the present moment are all advantages gained from yoga. Increased energy, flexibility and intuition are included as well. Such things can lead to more fulfilling relationships and a greater feeling of inner peace.

Physiological benefits • Blood Pressure decreases • Cardiovascular efficiency increases • Gastrointestinal function normalizes • Reaction time improves • Strength and resiliency increase • Endurance increases • Energy level increases • Immunity increases • Pain decreases Through being your own advocate, or an advocate for • Depth perception increases someone you care about, you become empowered. • Improved sleep

Psychological benefits • Self-acceptance and self- actualization increase • Anxiety and depression decrease • Concentration improves Living with pain – be your own advocate • Memory improves The dull, morning backache treatment is never about the cacy.com. The website offers • Mood improves that creeps into the afternoon, clinician’s intervention alone, plenty of information and • Learning efficiency improves the throbbing between the but about the clinician and resources, including the free • Social skills improve eyes, the aching stiffness in the patient (and family) working Handbook for People with Pain, joints that causes tossing and together.” which contains tips and tools to Many find yoga to be a more relaxing turning all night–pain touches be an effective communicator and mentally beneficial form of fitness us all. For many, it fades, but This type of clinician-patient with your (or your family’s) than traditional exercise. With yoga, for others, it persists and lowers relationship and the patient’s clinician. effort is minimized, and there’s low quality of life. self-advocacy are essential risk of injuring muscles and ligaments. when it comes to managing Finding good pain care can be It’s a noncompetitive, process- According to a 2011 report one’s pain. Self-advocacy a challenge. Pain isn’t oriented form of fitness that allows for conducted by the Institute of refers to an individual’s ability something you “just have to live limitless possibilities for growth in self- Medicine (IOM), about 100 to communicate, negotiate or with,” as people often awareness. Traditional exercise is million adults in the U.S. suffer assert his or her own interests, mistakenly believe. Being your competitive, goal-oriented, with from chronic pain–a condition desires, needs and rights. It’s own advocate will validate your maximized effort and rapid, forceful defined by pain that lasts more often the first step in the pain, help you seek out support movements. While beneficial for than six months and persists journey to ensure appropriate and offer it to others. It’s about some, traditional exercise can leave despite medical treatment. diagnosis and treatment of empowering the patient with the body and mind exhausted and pain. Though many medical knowledge, information and fatigued for hours afterward. Yoga, on When managing this pain, the providers have patient self-respect. the other hand, leaves the body and mind refreshed and feeling energized, IOM report recommends an advocates that serve as a link interdisciplinary approach that between the patient and which may be the better option for actively involves the patient in provider, oftentimes the best some. their own care. According to the advocate will be yourself. IOM, “The effectiveness of pain treatments depends greatly on For help and tips on how to be the strength of the clinician- your own advocate, visit patient relationship; pain www.inthefaceofpain.com/advo

7 NEW PRODUCTS Summer 2014

Knit Hat Fingerless Mittens Tervis Bottle Suffering from a case of cold ears? This is Hands warm? Check. Finger freedom? Guaranteed for a lifetime to keep drinks typically a sign you need to support the Check. Supporting the Scleroderma hot and cold. It also happens to fight Scleroderma Foundation with a nice, warm hat. Foundation? Double check. scleroderma. Why drink from anything else? $15.00 $20.00 $20.00-$27.00 (with handle)

Fleece Sweaters Foot Buffer Scleroderma Pen

Make sure you’re fashionably warm with This one speaks for itself. “De-FEET” What’s mightier than the sword? A pen from these fleece sweaters emblazoned with the scleroderma. Get one. Heck, you have the Scleroderma Foundation, of course. Scleroderma Foundation logo. two feet, get two. $1.00 $30.00 $2.00

Scleroderma Bracelet

Some may wear gold or Please contact Executive Director, Laura Dyas at silver. Others wear a cause. [email protected] for ordering information.

$3.00

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Summer 2014 MICHIGAN SUPPORT GROUP INFORMATION

WWW.SCLERODERMA.ORG/SUPPORTGROUPS

Ann Arbor Support Group Grand Rapids Support Group Group Leader: Leslie Nardoni Group Leader: Jean Morrison {[email protected], 734-660-2600} {[email protected], 616-791-9384} Meets the 1st Wednesday of every month, Meets the 3rd Monday of every month, March-November from 7-8:30p at: January-November from 6:30-8p at: Scio Farms Estates Clubhouse Holy Spirit Catholic Church 6655 Jackson Rd., Ann Arbor, MI 48103 2230 Lake Michigan Drive NW Grand Rapids, MI 49504

Auburn Hills Support Group

Support Group Leader: Glenda Coudret Livonia Support Group [email protected], 248-798-3267 Group Leader: Sue Harris Meets the 1st Thursday of every month, {[email protected], 248-982-5740} February-November from 6:30-8p at: Meets the 1st Thursday of every month, The Community Center February-June and September-November 1827 N. Squirrel Rd., Auburn Hills, MI 48326 from 7-8p at: Livonia Senior Center

15218 Farmington Rd., Livonia, MI 48154

Clinton Township Support Group

Group Leader: Nancy Stephens Petoskey Support Group {[email protected], 586-206-5744} Group Leader: Molly Spencer and Christel Goetsch {[email protected], 231-537-2093} {[email protected], 586-677-9042} Meets the 3rd Thursday of every month, Meets the 3rd Saturday of every month, April-November from 1-3p at: March-April and June-November from 11-1p at: John and Marie Demmer Wellness Pavilion Henry Ford Medical Pavilion 820 Arlington Ave., Petoskey, MI 49770 4th Floor, Rooms 4 & 5

16151 19 Mile Rd., Clinton Twp., MI 48038

Virtual Support Group

Group Leader: Judy Nichols Downriver Support Group Please contact Judy at: [email protected] Group Leader: Annie Valle for additional information. {[email protected], 313-291-2055} and Virginia Tyson {[email protected],

734-658-7729}.

Meets the 3rd Friday of every month,

May-November from 11-1p at: Our Lady of Angels Catholic Church 6442 Pelham Rd., Taylor, MI 48180

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Become invested in the Michigan ChapterSummer 2014

The Michigan Chapter can only do so much by information for our Resource Guide. sponsor for an event or ask itself. It greatly depends on contributions from This includes all types of medical someone you know to be a others. Even the smallest extension of generosity professionals, including primary sponsor. Levels range from $250 to can make a difference. Whether it’s writing a caregivers, dentists and every type of $5,000. check, writing a letter to Congressional leaders or “ologist” a scleroderma patient sees. simply helping out at a fundraising event, you determine the success of the Michigan Chapter ü Nominate a potential Board of ü Keep your personal data updated. This and the ultimate goal of finding a cure for Director member who is from the saves the Chapter thousands of dollars Scleroderma. Some ideas to get started: community and has demonstrated a a year in mailing costs. Email changes track record of delivering results. ü Write letters, make phone calls and to [email protected].

send emails to your congressional ü Determine how planned giving can leaders asking them to become co- ü Start a support group in your area. benefit your future and the future sponsors of the Scleroderma Research growth of the Michigan Chapter. and Awareness bills and to support ü Become a member. other advocacy efforts.

ü Create a fundraiser to benefit the ü Support the Scleroderma Foundation chapter. Michigan Chapter through your work

place giving programs, the United Way campaigns, the Combined Federal ü Volunteer for one of the events. Campaign, a State Employees Federated Appeal or a Combined ü Make a monetary contribution in honor Municipal Campaign. or memory of a loved one.

ü Send the Chapter your physician ü Be a corporate, business, or individual

DONATION RETURN FORM

Scleroderma needs a cure and I want to help the Michigan Chapter by donating today!

Advocate…..$5,000 Patron…..$ 3,500 Benefactor…..$2,500 Friend……...$1,500 Donor……$1,000 Contributor…..$500 Other….. $____

Name: ______Address: ______City: ______State: ______Zip: ______E-mail: ______Phone: ______

_____Please renew my membership dues, $25.00 for 2014. ____Please enroll me as a new member, for $25.00.

This gift is made in honor of or in memory of ______.

I would like to contribute on a monthly basis. Please send me envelopes. I will contribute $______per month for 2014 to further the Michigan Chapter’s mission.

Credit Card Information:

Number: ______Expiration date: ______CVD code: ______

Signature: ______

Scleroderma Foundation Michigan Chapter | 23999 Telegraph Rd. | Southfield MI 48033

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Summer 2014 SCLERODERMA MEMBERSHIP NEWS

Have you ever wondered why your membership is so [email protected]. important? Your membership shows that you are part of the scleroderma family, searching for the cause and cure of this PHYSICIAN AND MEDICAL PROFESSION often devastating disease. Your dues also help to make the INFORMATION COLLOQUIUMS: The Michigan Chapter following happen: provides medical professionals in the state of Michigan educational seminars and one-on-one interaction with PATIENT EDUCATON PROGRAMS: Throughout the state scleroderma patients in an effort to educate them of Michigan, all year long. The Michigan Chapter also hosts regarding the symptoms and experiences of patients. a yearly fall season all-day conference, where renowned researchers and clinicians provide up to date information STATEWIDE RESOURCES FOR SCLERODERMA for scleroderma patients. In 2014, this conference will be PATIENTS AND FAMILIES: Scleroderma patients and held in conjunction with four other autoimmune related their families have unlimited access to professional nonprofits, bringing information on overlapping illness to resources and referrals within the state of Michigan. patients, caregivers and family members. Contact the Chapter at (248) 595-8526 to receive updated information. SUPPORT GROUPS THROUGHOUT THE STATE OF MICHIGAN: Our goal is to have a meeting available for you MEMBERSHIP IN THE NATIONAL SCLERODERMA within a short driving distance. Many meetings include FOUNDATION: This membership provides quarterly speakers on a variety of topics of interest. If you have not yet issues of the national magazine, Scleroderma Voice, attended a meeting, we urge you to do so. These are NOT access to educational awareness programs and literature, your typical “support group” meetings. Our support groups plus, a discounted registration fee at the national are focused on updated and educational advancements conference. regarding scleroderma and overlapping autoimmune diseases. Our support group meetings are educational, informative and FUN! We have also added a virtual support group in 2014 to help bring updated information to those who cannot make it to meetings.

STARS PROGRAM (SHARING-TRUSTING-AND- LEVELS OF MEMBERSHIP REBUILDING): Matches members with others in similar AND BENEFITS situations and needs. “If you have scleroderma ... you need not feel alone.” Telephone support, computer support and friendship can help you whether you are newly diagnosed or you have had scleroderma for 20 years. Reach out and Basic Member of the Chapter call the Michigan Chapter. Become a STAR and start living {$25 a year} today! Friend of the Michigan Chapter TELEPHONE SUPPORT: Our professional staff is available to provide support, information and referral services to you {$50 a year} In Honor or Memory Card five days a week. Our Executive Director is a licensed social worker and counselor available to help you and your Supporter of the Michigan Chapter family. {$100 a year} $25 VISA Gift Card NEWSLETTER AND WEBSITE: The Michigan Chapter publishes a newsletter, The Michigan Insider. This Companion of the Michigan Chapter informative publication provides updated medical articles {$250 a year} $50 VISA Gift Card and information about what the Michigan Chapter is doing to better serve your needs. Our website has information about our events, latest fundraising efforts and advocacy Champion of the Michigan Chapter efforts. Make sure to continuously check it out at: {$500 a year} $100 VISA Gift Card www.scleroderma.org/michigan and download our patient, caregiver and family guides. Become a Michigan member and send in your check E-COMMUNICATION: The Michigan Chapter produces E- today to: 23999 Telegraph Rd., Southfield MI 48033. Communication filled with informative and educational articles, healthy recipes, advocacy updates and information about the current activities within the Chapter. To receive 11 the E-Communication, send an email to

NON Summer-PROFIT 2014 Organization

PAID Michigan Chapter PERMIT #229 Ann Arbor, MI 23999 Telegraph Rd. Southfield, MI 48033

The Michigan Chapter needs your email address in order to maintain an updated and correct database. With the launch of the new national website, it is now more important than ever to forward a working email address to the Chapter. The Chapter has an e-communication

newsletter that is sent out monthly and includes news articles, recipes, information about the advocacy Thank you to our Stampede Scleroderma sponsors program and updates regarding the events. We ask that and the families committed to finding a cure: you please forward your working email address and Actelion, Walgreens, Plante Moran, Penske contact information to: [email protected]

Corporation, Transportation Resource Partners, It is also important that you send your physician Blackwell Ford Inc., Toshiba Business Solutions, information to the Chapter for the patient resource guide. Sav-On Drugs, Mutual Electric, Green Safe A complete list of doctors will help other patients find Products, Roush, EMC2, Westborn Market, Tim medical professionals who understand and are familiar Hortons, Target, National Wholesale Printing, with scleroderma, which can make a world of difference Running Fit and Best Buy. in the quality of care received. Steve and Laura Dyas Bruno and Jackie Larese Tom and Marilyn Assiff Scleroderma Foundation Michigan Chapter 23999 Telegraph Rd., Southfield, MI 48033 John and Ilene Michalski Phone | 248-595-8526 Fax | 248-595-8586 Conrad and Annie Valle 12 Find us on twitter: sclerodermami Find us on facebook: sclerodermafoundationmichigan