Message from the Executive Director:
Spring is here and I shoveled my sidewalk this morning! I guess in Syracuse you can experience all seasons in one day.
We had 3 good walks in March and many thanks to all those who participated in the events. Your continued support is very much appreciated. I’d like to give a shout out to Team Best Ever who also participated in the Utica event. Thank You!
Many thanks also to Kathy Vadala for her untiring efforts on behalf of the Annual Fish Bowl. Please take a moment to read the story of how we got to year 25!
Plans are underway for the Annual Dinner of Hope. The Dinner will now be held at the Syracuse Marriott Downtown and we do have a few other changes to switch it up a little. If you would like more information on the Dinner or how to purchase a ticket, please call the office at (315) 438-4790. Those being honored as a Crusader for a Cure are: Chow Downey, Dr. & Mrs. Bruce Baker and Robert Andrews. Our volunteer award will be presented to: Carolyn Vickery.
Please read carefully the article that Annette focused on NARCOMS and take advantage of their information. To enroll into NARCOMS is easy. Follow the instructions that Annette outlined or call the office and
we can provide the toll-free number or website information.
Look inside for:
► Welcome Dr. McGraw
► Myelocortical MS – New Subtype
► Annette’s Corner
► Syracuse & Binghamton Walk Finals
► Smile.Amazon.com Info
► Support Groups
► For Sale
► Are you fit to Drive???
► Womens Weekend Info
What does NARCOMS stand for?
NARCOMS stands for the North American Committee on MS. It is a registry for people who have multiple sclerosis. A participant will complete 2 surveys per year with re-spect to information on themselves and ex-periences with MS. The data is used in re-search studies and to further help our un-derstanding of multiple sclerosis. Partici-pation is absolutely voluntary and all aspects of privacy, identity and all responses are secure.
If you are interested and would like to be a participant and help continue the great work conducted by NARCOMS, call toll free to:
1-800-253-7884 or contact them via the web at www.narcoms.org.
New MS Subtype By Colleen Doherty, MD | Medically reviewed by a board-certified physician
In a study outlined in Lancet Neurology, investigators examined the brains and spinal cords of one hundred deceased patients with MS. During their analysis, the investigators found that twelve of the MS patients did not have demyelination in the white matter areas of their brain (only in the spinal cord and the cerebral cortex, which is the outer layer of the brain). This is remarkable, con -sidering white matter demyelination, as stated earlier, is the hallmark feature behind MS, or the “why” behind how MS lesions form. You may wonder then why people with “myelocortical MS” had typical white matter MS lesions on their brain MRIs (when they were alive). The study authors aren’t totally sure, but they suggest that swollen, dying nerve cells must resemble
white matter myelin loss on MRI. As a result, only through autopsy can one
diagnose myelocortical MS.
What Does This Mean?
Aside from gaining deeper knowledge about the pathophysiology of MS, this finding—that nerve cell loss can occur independently from myelin loss—will hopefully spark some next steps for MS researchers. For example, it may inspire improved brain MRI techniques for analyzing subtle nerve cell changes. This way experts may be able to more easily diagnose and predict the course or prognosis of a person’s MS. By dividing MS into subtypes, researchers may be able to better target therapies—taking a more individualized approach to MS care.
All this said, keep in mind, we do not know the prevalence of people with myelocortical MS versus traditional RRMS. In the study, there were 12 patients (out of 100) with myelocortical MS. However, all of the de-ceased patients in the study had died of com-plications from advanced MS. It’s difficult, therefore, to compare the study MS pop-ulation with the real world MS population.
Regardless, even if those with myelocortical MS make up only a small population, this discovery will likely have worthy implica-tions for everyone with MS.
A Word From Verywell –
The big picture here is that experts are getting closer to teasing out the biology behind MS, which is proving, perhaps, to be just as unique a disease in its mechanism of action as it is in its symptoms. In the end, the discovery of an MS subtype brings us one step closer to finding a cure—a hope that we all cling to and live for each day.
Verywell is part of the Dotdash publishing family.
MS Resources Support Group Information
Interested in sharing experiences about MS, come with family/friends to a meeting.
2nd Tuesday of the month
Lincoln Middle School
1613 James St. Syracuse NY 13203
6:30PM-8:00PM School Cafeteria
Contact: Angela McBride- (315) 876-2614
Madison County Area- 1st Monday of the month
Onondaga Center, Russell Street, Chittenango – Conference Room
2:00PM-4:00PM Contact: Donna Denison for more info at (315) 655-3517
Auburn/Cayuga County Area-
4th Tuesday of the month
Finger Lakes Mall, Rts. 5 & 20
Auburn, Community Room
Enter at Mall Entrance by Penney’s. 7PM
Contact: Susan Rusinko (315) 255-0982 or Bernie Caruana at (315) 252-1183
Liverpool Group –
3rd Tuesday of the month
United Church of Christ (UCC) in
Bayberry, 215 Blackberry Rd. 6PM – 8 PM in Fellowship Hall, follow the signs to the meeting room. Contact: Carolyn Vickery –(315) 409-9692
Broome County Group –
4th Thursday of the month
Dunkin Donuts on Reynolds Rd.
Johnson City in the Community Room
6:30PM – 8:00PM
Contact: Rick Fiori – (607) 321-1489
MS Breakfast Buddies –Meeting in the Binghamton area:
Contact Sue Maston: (570) 623-2302 for times and locations.
Fairmount/Camillus Area –
1st Tuesday of the month
Fairmount Community Library
Chapel Dr. Fairmount NY 13219
1:30PM – 3:00PM Community Room
Contact: Ericka Braundel- (315) 391-6912
Amazon.com Offers Incentives to Charity
For all of you who purchase items through Amazon.com, we have news for you. If you search Smile.Amazon.com and enter Mul-tiple Sclerosis Resources in the Charity sect-ion, we will receive .5% of your overall sale. Simple, it sure is! Log onto the computer and remember MS Resources as you make your purchases, but it must be entered through Smile.Amazon.com. Questions, call Jessa at (315) 438-4790.
Post on your face-book page so your family, friends and all your contacts will know about it. Paste it, share it, Use it!
Amazon donates 0.5% of the price of your eligible Smile.Amazon purchases
Smile.Amazon is the same Amazon you know. Same products, same prices, same service.
Support your charitable organization by starting your shopping at Smile.Amazon.com.
BE Sure you…
Select a Charity (This is where you would type in Multiple Sclerosis Resources of Central New York, Inc. )
You’re invited to an OCREVUS event on relapsing MS and Primary Progressive MS.
When: Wednesday, May 8, 2019 6:00 check in, 6:30 program
Where: The Craftsman 7300 E. Genesee St.,Fayetteville NY 13066
Who: Brandon Yehl, PA-C
Greater Rochester Neurology
Learn more about treating MS and primary progressive MS from an expert
Discover why OCREVUS may be the right choice for treating relapsing MS and PPMS
Connect with others whose lives are affected by relapsing MS and PPMS
Sign up Now!
I was sitting in Church on March 9th, and before Mass started a young, disheveled man slid into the pew across from me. The sign on the front of his walker read: Any donation will help, please, in the name of God. He clearly was not feeling well be-cause he was coughing quite frequently but he stood when necessary and knelt on the floor at those times of the mass when you are to kneel. I prayed for him throughout the mass and smiled at him and gestured for peace to be with him. I was happy that he was in Church and certainly not bothered by his appearance, but concerned about his cough. After mass I offered a monetary donation to him and suggested he see a doc-tor for the cough. He said to me that he was going to. I took him at his word, gave him a hug and we parted. At a time when the world seems to be in such turmoil with school, workplace and houses of worship having mass shootings, homeless people being doused with water, the elderly being neglected and so much more, I wonder what it will be like 5 years from now? Kindness can go a long way can’t it? Why is it dif-ficult to be kind, but so easy to be mean or sarcastic or oblivious ? I can only speak for myself, but I am definitely paying closer at-tention to my words, their tone and delivery. I do not want to be mean or sarcastic, even to get a laugh. My reading of the book “The 4 Agreements” instructs us to be impeccable with our word. I make a conscious effort to be kind to everyone and especially those who need a little more kindness and pray for those who are less fortunate. I trust my efforts may make a person feel just a bit better about themselves, their day, etc. I ask you; reflect on this for a moment: Are you conscientious about your spoken and written word? Does your tone sound demeaning or harsh? Is that how you want to be known to others?
Are you FIT to DRIVE?
By Mark Murphy, CEO
To better preserve their driving ability, seniors might want to take advantage of a free educational program created by the American Society for Aging. Called CareFit, the programs 12-point safety check can help older drivers identify any important adjustments they can make to improve their driving. These factors include proper mirror alignment to minimize blind spots, good foot proximity on the pedals to reduce leg-muscle fatigue and improve reaction times, and appropriate steering wheel distance to help minimize the risk of serious injury during an accident.
The staff at McHarrie Life Senior Community is available 24hrs. a day to serve individuals who need assistance with activities of daily living. To learn more, please call them at (315) 638-2521.
Reprinted with permission from McHarrie Life Senior Community.
Wheel Chair For Sale
Quantum Edge Motorized Wheelchair, new tires, fully refurbished. Call Kathy @ (315) 468-1933 $1000 or best offer.
Roommate Wanted: Share expenses, off street parking, Westvale area. Inexpensive rent, use of washer/dryer. Call Kathy for more information @ (315) 468-1933
Women’s Weekend Getaway
The Annual Women’s Weekend Get Away is scheduled for June 7, 8, 9, 2019 at the White Eagle Conference Center in Hamilton, NY. Cost is $135 which includes your room and all meals, activities and snacks. We promise a fun filled weekend and an opportunity to share experiences and meet new friends. Call (315) 438-4790 to request an application. Only completed applications will have space reserved. You may send your weekend fee with the application or at a later time, but the application must be returned. Rooms will be reserved on a first come – first serve basis.
Please don’t delay, call today!
Syracuse Walk Wrap Up
Binghamton Walk Wrap Up
Thanks to all the walkers, donors, volunteers and sponsors for their support of the 21st Annual Mission Steps Walk and MS Awareness Day in Syracuse and Bing-hamton. Over $47,000 was raised in pledges for the Syracuse event. Binghamton raised over $5,000 and Utica results will be listed in the next newsletter.
Our top 10 Highest Individual Fundraisers were for Syracuse:
1. Susan Rusinko
2. Bill Jackson
3. Kimberly Berger
4. AnnMarie Fleet
5. Trisha Evans
6. Sue Dahl
7. Donna Denison
8. Carolyn Vickery
9. Paul Moretti
10. Mike Fabery
Thanks to Betty Calkins for being the top individual fund raiser in Binghamton!
Fish Bowl 25 –
How We Made It To 25 Years:
Kathy “Fish” Vadala decided to go out with a few friends and bowl a couple of games for the fun of it. One person from the group mentioned what a riot it was and maybe they should ask more people to join them and make it a little fund raiser for MS. Kathy was diagnosed in 1977 with MS and her friends rallied around her and for her. The first “official” year, 1994 at the Erie Blvd. Lanes, they had about 50 people come and support the event and about $350 was raised and donated. The event has grown in par-ticipation, selling out all 24 lanes at Bowl Mor for the past several years and gen-erating proceeds between $4,500 -$5,550 for MS Resources. Fish missed 1 year when she was hospitalized with a gall bladder is-sue, but other than that she is stood on the lane and thrown the first ball of the event. So…you are scratching your head won-dering how come she is nicknamed “Fish”? Kathy’s dad owned and operated Vad’s Bait Shop at 553 N. Salina St. and while a youngster in school, Kathy was dropped off in the Minnow Truck and another student called her “Fish”. It was offensive to Kathy at first, but through high school, college and now, she embraces the nickname.
Many thanks to Kathy “Fish” Vadala for her continued dedication to this event and all those involved. 2019 results are over $5,700.
Save The Date
Clambake II will be on August 4, 2019 at the Spinning Wheel. Entertainment, great food, raffles, prizes…so much to do and eat. Save the date and be sure to spread the word to all your friends, family and co-workers.
We are looking for baskets to raffle off or individual items, if you would like to help, please call the office at (315) 438-4790.
Welcome to Upstate Medical University
Dr. Corey McGraw
Dr. Corey McGraw joined Upstate Medical University in October 2018. He received his medical degree from the University of Colorado Health Sciences Center and completed his Neurology Residency at Albert Einstein College of Medicine. Dr. McGraw completed his MS fellowship at Mount Sinai School of Medicine in 2012. Before joining SUNY Upstate, he was the Division Director of MS and Related Diseases at Montefiore Medical Center and an Assistant Professor at Albert Einstein College of Medicine. Dr. McGraw is board certified in Neurology and has participated in a number of clinical trials. Dr. McGraw is committed to a comprehensive approach to MS care which includes managing disease activity as well as symptoms management with the goal of maintaining a good quality of life function. He helps direct clinical trial research for multiple sclerosis patients at the institution and also participates in translational research with his basic science colleagues. He is passionate about medical education, and in particular, teaching
medical students and residents about the unique care needs for people living with MS. If you are interested in setting up an appointment to see Dr. McGraw for your MS care or clinical research participation, ask your primary care provider to fax referral information to (315) 464-5350 and the office number is (315) 464-4243.
Many THANKS again to our Walk 2019 Participants, Sponsors, Volunteers, Donors and Vendors! We are grateful for your continued support.
Sanofi Genzyme…EMD Serono…
Pave the Way Daycare…Excellus Blue Cross Blue Shield…Massa Con-
Anaren Microwave…Carrols Restaurant Group…Empower FCU…WellCare..
Etain, LLC…MedMarijuana Consultants…Thermapparel.
Charles Heating & Air Conditioning…
VP Supply…Burns Bros…Hofman Sausage..
Kinney Drugs Foundation…Anheuser Busch
Ron Ross – Twin Trees Too! Table Hopping
Marbeth Sweeney… United Health Care
Thompson & Johnson Equip…Xlyem Inc.
Haun Welding…Carl Fahrenkrug…
Microwave Filter Co…Care Fare, Inc…
Jack’s Septic Service…DeFrancisco & Falgiatano Law Firm…Langdon’s Apothecary…Moore’s Tire Sales, Inc.
Lou Santaro – Attilio’s Restaurant
Call us if you need us…..
Multiple Sclerosis Resources of CNY, Inc. ® is a source of information concerning topics on Multiple Sclerosis. The information provided to you is derived from professionals in the field and do not represent our recommendations or opinions. We do not endorse any products, services or specific treatments. For the best advice for you, please consult your physician.
Free Free Free Free
Electric Hospital Bed with controller and trapeze bar. Looking to give to a client who may need it. No charge, like new. Please call Debbie – (315) 299-4362
Multiple Sclerosis Resources of Central New York, Inc. ®
PO Box 237 6743 Kinne Street
East Syracuse, New York 13057
Newsletter is written and edited by:
Call (315) 438-4790/1-800-975-2404
Fax (315) 438-4704
Website – www.msresources.org