Are You Looking For MS Support And Guidance? Look What I Found!

When I pursued my dream of becoming a freelance writer and health advocate I had no idea if anyone would read my words and have any interest in what I had to say. I took a leap of faith, hoping that my experience with illness coupled with my deep passion to help others would be enough to make a difference in someone's life.

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I'd like to believe it has. The heartfelt comments I receive from readers tugs at my heart, some more than others, reminding me that the path I chose was the right one.

I'm not one to toot my own horn. In fact the hardest part of my work is the need to self-promote. But I'll share two recent comments that told me I'm in the right place.

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With support and guidance for my readers in mind I have a few resources I'd like to share with you.

I finally had a chance to leaf through the pamphlets I collected at the recent Consortium of Multiple Sclerosis Center's annual meeting. Each one comes from an exhibitor, people who are passionate and committed to helping the MS community.

“But we are strong, each in our purpose, and we are all more strong together.”
~Bram Stoker, Dracula

supportMotherToBaby: I was impressed with MotherToBaby, a free service from the non-profit Organization of Teratology Information Specialists. MotherToBaby offers up-to-date research and so much more. Their staff of experts are available to answer questions about, for example, medications a mom may need to take or products they are thinking of using. Since 1987 experts in the field of birth defects speak to mothers, family members and health care professionals about their concerns. From the safety of medications to abuse of alcohol and drugs, MotherToBaby is available to answer all of your questions. You can find them online at MotherToBaby.org or toll-free at (866) 626-6847.

The MS Cure Fund: According to their website "The MS Cure Fund is a national non-profit organization. It was started by MS patients to put a face on the disease, create awareness through educational seminars, and raise funds that go directly to Multiple Sclerosis research. It is dedicated to help eliminate this debilitating disease with the hope to find a cure."

supportsupportMS-GO: I was already on the mailing list of MS-GO before leaving for Maryland. It's a great resource to find out what MS events, support groups and meetings are taking place in your neck of the woods. Simply sign up for free to receive a calendar of events in your state. I love receiving my weekly calendar in my inbox! Go to multiplesclerosis-go.com.
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NARCRMS: NARCRMS is an acronym for North American Registry for Care and Research in Multiple Sclerosis and is a special project of CMSC for patient and physician-reported outcomes. NARCRMS is an ambitious, highly collaborative effort between MS registries, research investigators and patients to synthesize actual data collected from patients to aid in the design and conduct of clinical trials.

I'd say that's extraordinary!

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"The registry will allow stakeholders to freely access de-identified data. NARCRMS will be the first open source database to link North American MS Centers in the US and parts of Canada."  You can check out NARCRMS yourself at narcrms.org.support

AllCare Plus Pharmacy: I didn't have a chance to speak with this exhibitor but it looked interesting. According to their pamphlet AllCare offers "World Class Multiple Sclerosis treatments available from your trusted specialty pharmacy." They consider themselves patient centric by offering a unique plan of care developed for every MS patient, medication and disease state education, clinical pharmacists available 24/7, monthly wellness checks and direct enrollment into manufacturer sponsored programs.

For provider support they claim their average turnaround time for a completed benefits investigation and prior authorization is less than 2 hours. You can reach them at 1-855-880-1091 or online at AllCarePlusPharmacy.com. Let me know what you think.

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TurnFirst.org: TurnFirst is a private foundation offering a way to alleviate the anxiety usually associated with being newly diagnosed. They ask doctors to tell patients that TurnFirst is a a "safe place to send newly diagnosed patients when they leave your office. We pick up where you leave off and help them through the learning curve one step at a time at their own pace."

They teach patients about MS, help them explore treatment options, direct them to valuable resources, empower them to live full lives and connect them to a supportive community.

I wish this was around when I was diagnosed!

You can reach them at (800) 637-0522 or online at TurnFirst.org.

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Photo Credit: TurnFirst.org/TurnFirst Foundation

International Journal of Multiple Sclerosis Care: Before I go I want to let you know about a magazine I'm completely devoted to and I think you should check it out, too.

"The International Journal of MS Care is the official peer-reviewed publication of the Consortium of Multiple Sclerosis Centers (CMSC). It was also adopted as the official publication of two sister organizations: the International Organization of Multiple Sclerosis Nurses (IOMSN) and the International Organization of Multiple Sclerosis Rehabilitation Therapists (IOMSRT). It is published bimonthly...and contains peer-reviewed articles in areas of interest to multiple sclerosis health-care professionals.

Topics include neurologic, nursing, rehabilitative, psychological, and psychosocial care and quality-of-life issues of people with MS and reflect the diversity of the journal’s readership. Categories of manuscripts considered include original research, clinically relevant reviews of the literature, case reports, consensus statements, controversies, book reviews, and letters to the editor"

For more information about the Journal please go to ijmsc.org.

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This is a small sampling of the exhibitors at CMSC but they are the ones I felt were of interest to my readers. I hope you agree. If you have any questions please let me know or reach out directly to CMSC through their website at mscare.org.

 

 

Knowledge Is Power: 7 Reasons Your MS Medical Team Should See This New Website

Those who are devoted readers of my blog know my MS story by now. They know that I was diagnosed in 1986 during the “Dark Ages” of MS, when there were no approved medications, no Internet to help patients find important information, and nowhere to turn for support from the convenience of their home.

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Times have changed.

A few years ago I worked for an incredible organization, The Consortium of Multiple Sclerosis Centers (CMSC), who have since become accredited to provide continuing medical education for physicians. CMSC, along with The France Foundation and Nurse Practitioner Alternatives (NPA) have worked tirelessly to create Advances in Multiple Sclerosis (AIMS). AIMS is a curriculum of educational programs designed to provide high quality, up-to-date information on advances in the treatment of MS.

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The AIMS site includes both live and on-demand learning opportunities, and is accessible and free of charge to any practitioner by visiting the AIMS site.

The face of MS is changing everyday with new and exciting research taking place worldwide. If you’re like me, you not only want need to be your own best advocate, but you also want need your doctor to be knowledgeable about the latest research and trends in MS.

That is why I am asking you to visit the AIMS site. Find out what they have to offer, from LIVE activities and conference coverage to podcasts. Then recommend your clinicians do the same.

It’s in your best interest to let them know about this phenomenal website.

Here are 7 reasons your clinician should check out AIMS:

  1. LIVE meetings - Here’s an opportunity for practitioners to hear cutting-edge MS updates from renowned faculty in person. (NOTE: AIMS is holding a regional meeting on Saturday, October 11 in Orlando, Florida if your practitioner is interested. Go to the AIMS website for more information.)
  2. LIVE webinars - Here’s a convenient option for busy practitioners to hear topical updates.
  3. MS Tool - Allows practitioners to participate in a self-assessment survey to generate a customized learning plan.
  4. Recorded webinars and podcasts - Allows for on-demand education on a variety of critical topics from environmental and genetic influences, patient adherence, Vitamin D and much more.
  5. A printable MS primer - Offers a hand reference tool with information about immunopathology and disease process, use of MRI, new and emerging therapies, patient adherence, common adverse events and injection-related concerns.
  6. Continuing Education Credits - Neurologists, nurse practitioners, physicians’ assistants, nurses and other health care providers involved in the management of MS can obtain continuing education credit to help fulfill their professional requirements.
  7. The cost is free - This program is provided free of charge, and new offerings will continue to be added to the curriculum.

 

What are you waiting for? Check out the AIMS site and then let me know what you think!

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