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Connect with other members of the Les Turner ALS community while helping raise funds.

ALS Awareness Month

Our theme for this year’s ALS Awareness Months is “Faces of ALS.” A person living with ALS could easily be your spouse, parent, child, grandparent, aunt, uncle, or friend. Indeed, for many of us they are a spouse, parent, child, grandparent, aunt, uncle, or friend.

We’ll be posting each weekday throughout May. We’ll share the stories behind some of these faces, as well as important information and ways to offer your support to the faces of ALS and to their families and communities. Please join us. We’ll also be asking for your input on Facebookand Twitter, sharing how and why you are getting involved. If you haven’t already, please like our page on Facebook or follow us on Twitter so you can join in the conversation.

Tuesday: ALS Facts

Every Tuesday in May, we’ll post facts about or news on ALS--information you can share with family and friends via Facebook or Twitter. Along with research and patient services, education and awareness is a key part of the Les Turner ALS Foundation's mission. We believe that education leads to action.

May 28

7175dfd720d15b8d936e96c8f184d85c_f511.jpgThough ALS affects the motor neurons, the disease process generally does not affect other nerve cells. For example, the sensory neurons, which bring information from the sense organs to the brain, remain healthy. While a minority of ALS patients also experience dementia, most retain cognitive function even as their motor abilities deteriorate.

(Faces: Attendees view a series of paintings at the Arts4ALS exhibition earlier this month. Arts4ALS provides a way for people with ALS and their families and friends to voice emotions as they face an uncertain disease progression, or to honor the memory of loved ones.)


Monday: Stories to Inspire

Every Monday in May, we'll post a story from a patient, family, medical professional, researcher or supporter. Check out the story, and then consider how you might get involved. Also, be sure to share with family and friends via Facebook or Twitter.

May 27

a9dca777a307d1840fb0564fa2b27b9d_f510.jpgThis year, Run4ALS had its first-ever team at the Bank of America Shamrock Shuffle. This effort was largely driven by two teams running in honor of Tim Paust. The two teams included over 150 runners who raised a combined total of over $55,000. Check out our ALS Awareness Newsletter to learn about how this amazing effort came together, uniting many individuals from the Graylake area who have been impacted by Tim and his family.

(Faces: The Paust Family.)


Friday: Tag Days Preview

Tag Days drives happen all across the Chicago area every weekend in May! On Fridays, we'll post a look ahead to that weekend's drives. Be on the lookout in your neighborhood for volunteers in bright yellow vests. For more information on Tag Days, please visit our Tag Days page.

May 24

ed01cade64e89199429258e0cf7f6252_f500.jpgA huge thanks once again to all our Tag Days captains and volunteers. We have a few drives that will continue into June, so please stay tuned for a final announcement of the total raised.

(Faces: Connor Maytnier of the Barrington Tag Days drive.) 


Thursday: Foundation Facts

Every Thursday in May, we'll post a fact about or news from the Les Turner ALS Foundation. Share with family and friends via Facebook or Twitter, and let us know what you think!

May 23

834cb8b9f82dae5a2cc994a0d1df7fd0_f218.jpgThe Les Turner/Lois Insolia ALS Center is part of Northwestern's Ken & Ruth Davee Department of Neurology. Northwestern was recently ranked by U.S. News as one of the top 15 hospitals nationwide for neurology and neurosurgery, making it the top-ranked Chicagoland hospital in this specialty. Northwestern and the Les Turner ALS Foundation are proud to be a part of bringing world class care to people living with ALS in the Chicago and surrounding areas.

At the Center, trained specialists use a team approach to provide comprehensive treatment. During a visit, patients meet with several members of the team, and each provides input regarding assessment, care planning, education, and other health care needs.

(Faces: Dr. Heller demonstrates patient care for a resident. Training of future medical leaders is also a part of the mission of Northwestern and the Les Turner/Lois Insolia ALS Center.)


Wednesday: Getting Involved

Every Wednesday in May, we'll post different ways to get involved in the fight against ALS. Check out our suggestions and then share your own ideas on Facebook or Twitter!

May 22

a535e6001d5f6621590a434c9566bc01_f486.jpgAt the start of 2013, we relaunched our Young ProfessionALS group (YPG). YPG is a great way to meet other young professionals with a common interest in finding a cure for ALS. Many of our members have a personal connection to ALS, but we welcome anyone who is interested in making a difference! 

The Young ProfessionALS Group meets on the second Wednesday of each month. We meet for socializing, support, and to discuss new ways to raise awareness and assist those affected by ALS. YPG also puts on several exciting fundraisers each year, including an NCAA bracket challenge, cocktail hour, and Holla for ALS Casino Night. Other Young ProfessionALS also support the Foundation by competing in local races with the Run4ALS program, forming teams for the ALS Walk4Life, or volunteering for a local Tag Days drive.

Contact Megan Gaffney, special events associate, at mgaffney@lesturnerals.org for more info!

(Faces: Member of YPG at last year's Holla For ALS Casino Night.)


Tuesday: ALS Facts

Every Tuesday in May, we'll post facts about or news on ALS--information you can share with family and friends via Facebook or Twitter. Along with research and patient services, education and awareness is a key part of the Les Turner ALS Foundation's mission. We believe that education leads to action.

May 21

14f6de4a920a0fea74beb8c336db1ec0_f352.jpgApproximately 10 percent of all ALS cases are inherited forms, known as "familial ALS." Several genes have been identified that cause familial ALS--including the SOD1, ALSIN and FUS genes, all discovered or co-discovered by Dr. Teepu Siddique of the Les Turner ALS Foundation Laboratories. The remaining 90 percent of cases are called "sporadic ALS." In 2011, Dr. Siddique and his team of researchers identified a common cause of all forms of ALS: a broken-down protein "recycling system" in the neurons of the spinal cord and brain. Additional research is needed to determine how best to treat this faulty pathway.

(Faces: Dr. Teepu Siddique of the Les Turner ALS Foundation Laboratories.)


Monday: Stories to Inspire

Every Monday in May, we'll post a story from a patient, family, medical professional, researcher or supporter. Check out the story, and then consider how you might get involved. Also, be sure to share with family and friends via Facebook or Twitter.

May 21

afa65aadf7ba909af8b600153f396a3e_f509.jpgMike "Mish" Shedlock was recently honored as the Foundation's Volunteer of the Year. Mish has brought several new and creative fundraising ideas, already raising over $500,000 to support ALS research. Check out our ALS Awareness Newsletter to learn about Mish's efforts in honor of his wife, Joanne, who passed away from ALS on May 16, 2012.

(Faces: Mish, second from left, receiving his award at the Wine Country Conference. Pictured with, left to right: John Mauldin, Lauren Lister: Yahoo! Finance—Moderator, Chris Martenson, and John P. Hussman.)


Friday: Tag Days Preview

Tag Days drives happen all across the Chicago area every weekend in May! On Fridays, we'll post a look ahead to that weekend's drives. Be on the lookout in your neighborhood for volunteers in bright yellow vests. For more information on Tag Days, please visit our Tag Days page.

May 17

ed01cade64e89199429258e0cf7f6252_f500.jpgWe've got Tag Days drives coming up this weekend in the following communities: Chicago (Lincoln Park and Union Station), Elmhurst, Flossmoor, Grayslake, Northbrook, Northfield, Schaumburg, Southern Suburbs.

Thanks to the captains who have worked tirelessly to organize this weekend's drives--Cindy Fluxgold, Ninfa Queyquep, Fran Grund, Toni Meehan, Sharon Jordan, Mike Hamilton, Hollie Marts, Sharon Gainer, Katie Cotter--and to our volunteers for their dedication.

(Faces: Connor Maytnier of the Barrington Tag Days drive.)


Thursday: Foundation Facts

Every Thursday in May, we'll post a fact about or news from the Les Turner ALS Foundation. Share with family and friends via Facebook or Twitter, and let us know what you think!

May 16

b066bae68199f8c2931cb8ae15907ca4_f506.jpgThe research and patient care teams of the Foundation are based in the Chicago area, meaning your donations benefit patients and families in your own community. But the impact does not stop there. Our scientists, doctors, nurses and healthcare professionals are dedicated to improving care and advancing research all over the US and the world. The staff from our Home Care Team and from the Les Turner/Lois Insolia ALS Center annually organize the ALS/MND Nursing Symposium, drawing together nurses and other healthcare professionals. They also regularly contribute their knowledge to educational meetings and conferences. Our researchers publish in medical journals read worldwide, and host collaborative educational events such as the Symposium on ALS and NeuroRepair.

In 2012, the Foundation also served as the host for the International Symposium on ALS/MND, and is a founding member of the International Alliance of ALS/MND Associations.

(Faces: Members of our patient care team at the 2012 Allied Professionals Forum, hosted in Chicago by the Foundation.)


Wednesday: Getting Involved

89b7616b154bae5c85ec6fe1be3a2869_f217.jpgEvery Wednesday in May, we'll post different ways to get involved in the fight against ALS. Check out our suggestions and then share your own ideas on Facebook or Twitter!

May 15

Supporting the fight against ALS can be as simple as sitting down at your computer! From your computer, you can:

(Faces: Margaret McGovern-Denk, occupational therapist at the Les Turner/Lois Insolia ALS Center.)


Tuesday: ALS Facts

Every Tuesday in May, we'll post facts about or news on ALS--information you can share with family and friends via Facebook or Twitter. Along with research and patient services, education and awareness is a key part of the Les Turner ALS Foundation's mission. We believe that education leads to action.

May 14

3f1fb5f4f2abfd05cfc637941c74d1a1_f438.jpgTypically, ALS affects motor neurons in both the brainstem and spinal cord. Symptoms related to the brainstem neurons are sometimes referred to as "bulbar symptoms" and symptoms related to the spinal cord neurons are sometimes referred to as "somatic symptoms.") It is important to remember that ALS strikes people in different ways. The symptoms and progression of the disease will be different from person to person. It is also important to remember that several illnesses have symptoms similar to ALS. The diagnosis of ALS is a clinical diagnosis, and it may take several months of observation and retesting to reach a definitive diagnosis. That diagnosis should be confirmed via a second opinion from another neuromuscular specialist.

(Faces: Dr. Scott Heller, 2013 Hope Through Caring Award Dinner honoree, and one of the Les Turner/Lois Insolia ALS Center's staff neurologists. Dr. Heller and his colleagues bring decades of experience in helping patients understand their symptoms and diagnosis.)


Monday: Stories to Inspire

Every Monday in May, we'll post a story from a patient, family, medical professional, researcher or supporter. Check out the story, and then consider how you might get involved. Also, be sure to share with family and friends via Facebook or Twitter.

May 13

9b5c30f2b20865435136aaff4ca4e2df_f505.jpgOn February 25, 2013, the FDA held a historic hearing regarding ALS, giving patients, family members, caregivers, doctors, nurses, researchers and organizations the chance to speak about the impact of ALS and the urgency of developing new treatments. It was an event that Dick Jacobson and his wife, Kris, found themselves at the center of—practicing what he calls "self-advocacy..."

Read our ALS Awareness Month newsletter to hear more of the Jacobsons' story and to learn about the urgency of ALS advocacy.

(Faces: Dick and Kris Jacobson at the 2013 Hope Through Caring Award Dinner.)


Friday: Tag Days Preview

Tag Days drives happen all across the Chicago area every weekend in May! On Fridays, we'll post a look ahead to that weekend's drives. Be on the lookout in your neighborhood for volunteers in bright yellow vests. For more information on Tag Days, please visit our Tag Days page.

May 10

ed01cade64e89199429258e0cf7f6252_f500.jpgWe've got Tag Days drives coming up this weekend in the following communities: Elgin, Glenview, Lake Zurich/Wauconda, Marengo, Mt. Prospect, Park Ridge.

Thanks to the captains who have worked tirelessly to organize this weekend's drives--Bill Klawitter, Bonny Gaffen, Rick Mitchell, Trudi Falk, Kaylynn VanDriest, Brian Paradies, Debby Scheck, Lily Elderkin--and to our volunteers for their dedication.

(Faces: Connor Maytnier of the Barrington Tag Days drive.)


Thursday: Foundation Facts

Every Thursday in May, we'll post a fact about or news from the Les Turner ALS Foundation. Share with family and friends via Facebook or Twitter, and let us know what you think!

May 9

546af8a349c5e6b2682a4b002dd72748_f504.jpgEach year, the Foundation's Home Care and Community Services Team makes hundreds of in-home visits to ALS patients and their families. This is in addition to the hundreds of clinic appointments held each year at the Les Turner/Lois Insolia ALS Center. At their clinic visit or in-home visit, families also have the opportunity to learn about the Foundation's grant programs and equipment loans.

Check out this month's ALS Awareness newsletter to meet Laurie Fieldman, our Director of Social Services, and to learn about her passion for helping children whose parents are living with ALS.

(Faces: Laurie Fieldman on an in-home visit.)


Wednesday: Getting Involved

Every Wednesday in May, we'll post different ways to get involved in the fight against ALS. Check out our suggestions and then share your own ideas on Facebook or Twitter!

May 8

0d92decb397f32d7063e777952f692c8_f503.JPGHave you registered yet for our ALS Walk4Life? Early registration is one of the best ways to get your team organized and get a jump on fundraising.

It also provides opportunities to build team camaraderie. Why not challenge each other to recruit new team members, or start a friendly competition to see who can reach their fundraising goal first!

Register today!

(Faces: 2013 ALS Walk4Life Family Chair Bob Simonds at the 2012 Walk4Life with his team.)


Tuesday: ALS Facts

Every Tuesday in May, we'll post facts about or news on ALS--information you can share with family and friends via Facebook or Twitter. Along with research and patient services, education and awareness is a key part of the Les Turner ALS Foundation's mission. We believe that education leads to action.

May 7

692ba8dcd178353e21963f1b45a536b6_f242.jpgALS was discovered in the mid-1800s. Improved symptom management and interdisciplinary care help patients live longer and fuller lives, but nearly 150 years later, there is still no cure and just two medications are approved by the FDA. The Foundation is committed to changing this. With your support, we fund research that helps the scientific community understand the disease better, with the goal of new treatments and an eventual cure. We also participate in events like the ALS-specific FDA hearing, held earlier this year. These offer us the opportunity to provide education that is sorely needed in the wider population. Finally, through the Les Turner/Lois Insolia ALS Center, we participate in ongoing clinical trials. With your help, one day the Faces of ALS may be the Faces of ALS Survivors!

(Faces: Dr. Rob Sufit, director of the Les Turner/Lois Insolia ALS Center and director of clinical research trials for ALS.)


Monday: Stories to Inspire

Every Monday in May, we'll post a story from a patient, family, medical professional, researcher or supporter. Check out the story, and then consider how you might get involved. Also, be sure to share with family and friends via Facebook or Twitter.

May 6

07ca940fd38f8e949ca2501a98ad82b2_f409.jpgFor the second year in a row, Chris Benyo and Denise DiMarzo have completed the New Jersey Marathon. Over the course of these two marathons, they have also raised tens of thousand of dollars to support the Foundation. Read the New Jersey Star Ledger's pre-race story on Chris and Denise, as well as their post-race recap. Also, check out last year's ALS Awareness Month newsletter to learn more about how their idea for this incredible journey took shape. You can still donate on behalf of Chris and Denise.

(Faces: Chris and Denise with their team at last year's New Jersey Marathon. We will post pictures of this year's race as soon as we have them!)


Friday: Tag Days Preview

Tag Days drives happen all across the Chicago area every weekend in May! On Fridays, we'll post a look ahead to that weekend's drives. Be on the lookout in your neighborhood for volunteers in bright yellow vests. For more information on Tag Days, please visit our Tag Days page.

May 3

ed01cade64e89199429258e0cf7f6252_f500.jpgWe've got Tag Days drives coming up this weekend in the following communities: Algonquin/Lake in the Hills, Barrington, Carol Stream/Bloomingdale, Glen Ellyn, Lombard, Sycamore, Western Springs, Wheaton.

Thanks to the captains who have worked tirelessly to organize this weekend's drives--Deborah Guilbeault, Bob Lee, Chris & Connor Maytnier, Colleen Anderson, Tracey Kreiling, Gerry Weiler, Robin Yeager, Melissa Wilder, Dick Jacobson, Jan Fritsch--and to our volunteers for their dedication.

(Faces: Connor Maytnier of the Barrington Tag Days drive.)


Thursday: Foundation Facts

Every Thursday in May, we'll post a fact about or news from the Les Turner ALS Foundation. Share with family and friends via Facebook or Twitter, and let us know what you think!

May 2

aea0cd7afe87a1c244932e3f0cda17ac_f418.jpgDr. P. Hande Ozdinler has published a new paper in the Journal of Neuroscience. This paper explains how she and her team have been able to dress neurons from the brain's cortex in a green fluorescent "jacket." These neurons are affected by ALS and, for the first time, they can now be specifically studied.

Just 18 months ago, Dr. Teepu Siddique published a paper identifying a faulty protein mechanism as the first known common cause in all types of ALS.

What an exciting time to be part of ALS research. Your support will enable future breakthroughs that will continue to bring us closer to understanding ALS.

(Faces: Dr. Hande Ozdinler of the Les Turner ALS Foundation Laboratories.)


Wednesday: Getting Involved

0a7b36c1a5b908a91546a8bfcd209940_f498.jpgEvery Wednesday in May, we'll post different ways to get involved in the fight against ALS. Check out our suggestionsand then share your own ideas on Facebook or Twitter!

May 1

Get active! Spring and summer are the perfect time to be out and about.

(Faces: Sammie and Deb Paust)

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