Mom's Story

A discussion about Mom's Story and MS…

Archive for the tag “children”

Researchers Recruiting African Americans with MS Across the U.S. for Genetics Studies – Key to finding cause of MS and better treatments

Rationale: Genes are known to play a role in determining who is susceptible to developing multiple sclerosis, and may also influence the course of the disease. People living with MS can make a difference in studies searching for these genes by donating their DNA from blood samples. Identifying the exact location of MS genes could help determine who is at risk for developing the disease and may provide clues to its cause, prevention, and better treatment. Focusing on ethnic groups with lower susceptibility to MS (such as African-Americans) and higher susceptibility (such as individuals of Northern European descent), and searching for what is common and what is different in their genes may help pinpoint regions that contain MS genes. Large numbers of participants are needed to accelerate this research.

Details: It is not necessary to travel to San Francisco to participate in this study. Once an individual has completed the initial online intake form and has agreed to participate, they are emailed the links to two additional online forms and sent a kit via express mail. The kit includes a consent form, a health information privacy form, and a medical records release form. The kit also includes everything necessary for the blood draw, which can be taken to your local Quest Diagnostics Lab, where the blood can be drawn and then returned in a prepaid envelope to the UCSF MS Genetics Lab. There is no cost to the study participants.

Contact: To participate or request additional information, please complete our brief intake survey.

OR you may contact us directly:

Clinical Research Coordinator
UCSF Multiple Sclerosis Genetic Susceptibility Project
675 Nelson Rising Lane, Suite 235A, Box 3206
San Francisco, CA 94158
Email: msdb@ucsf.edu
Website: http://msgenetics.ucsf.edu/index.html
Toll Free Phone: 1-866-MS-Genes (1-866-674-3637)

Mom’s Story, a Child Learns about MS is available in more formats

Mom’s Story can be found on the following sales channels:
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Also available on Kindle, Nook,

Available as .Mobi and .epub files from mjnickum@saguarobooks.com

Give-away

The Giveaway for Mom’s Story on Amazon has ended. Thanks for participating. Mom’s Story, a Child Learns about MS is available on Amazon in paper: http://www.amazon.com/Moms-Story-Child-Learns-About/dp/147835819X/ref=tmm_pap_title_0?ie=UTF8&qid=1427210007&sr=1-1

and as an ebook on Kindle: http://www.amazon.com/Moms-Story-Mary-Nickum-ebook/dp/B00C0BO9TA/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=1-1&qid=1427210007

Also Available:
http://www.barnesandnoble.com

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Enter to win:

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Writing Mom’s Story

I began writing the story in late 2007. Actually, I began the story in February 1978. Immediately after getting out of bed that February morning, I couldn’t stand. The room was whirling, my stomach was churning. I sat on the edge of t he bed until my head cleared a little and I could stand. I tried to dress, but wasn’t able to bend down without the room spinning again and the nausea returning. I made a doctor’s appointment. He couldn’t find anything and treated me with Dramamine for a mild middle ear inflammation. It cleared after about a week and I put the occurrence in the back of my mind. In August of the same year, I awoke one morning with a gray spot in the vision of my left eye. It enlarged over the morning. By afternoon, my vision in my left eye was limited to the extreme outer edges. Being Saturday, I went to the Emergency Room, convinced I was going blind. An Ophthalmologist happened to be on duty. He diagnosed the problem immediately as optic neuritis and prescribed prednisone. That cleared in about eight weeks.
Fast forward to 1989. I had been a “normal volunteer” at the National Institutes of Health for several years. I was asked if I would volunteer for an MRI. They said it’s easy if you’re not claustrophobic, no needles, only some noise. I said I would be glad to do it. They were right, lots of noise but no other discomforts. About a week later, a physician called to tell me that they found something strange on my brain. I went back to the physician and came away with a definite diagnosis of multiple sclerosis (MS). I launched a search for information, this being pre-internet, I went to libraries and contacted the National Multiple Sclerosis Society (www.nmss.org ).
By June of 2006 I had retired on disability from my position as a Science Librarian and worked from home as an editor and writer. I attended a meeting of the Outdoor Writers Association of America (www.owaa.org ). I was interested in writing for children by this time and I attended a session given by the renowned children’s author, Kathleen Kudlinski (www.kathleenkudlinski.com ). Her one piece of advice (among others) that I took away from her presentation was: “Write what you know.”
In October 2007, after spending over a year researching and learning about writing for children, I asked myself, “What do I know?” It came to me quickly, I know about MS. I have been interested in health issues and have read quite extensively, especially about plagues and infectious diseases. But also about MS, I have an extensive library about the disease and I have reviewed books on the subject for Library Journal.

Now in it’s second edition.

Researchers seeking people with progressive MS for nationwide trial of oral therapy

Summary: Investigators are recruiting for a phase II clinical trial of ibudilast (MN-166, MediciNova, Inc.), an oral agent, in 250 people with progressive forms of MS. The study, called the SPRINT-MS trial, is principally funded by the National Institutes of Neurological Diseases and Stroke (NINDS), with additional support by MediciNova, the company that will supply ibudilast, and the National MS Society. The study will be conducted through the NeuroNEXT Network, a clinical trials initiative of the National Institutes of Health. Robert Fox, MD (Cleveland Clinic Foundation) is the principal investigator.

Rationale: Among other actions, ibudilast inhibits an enzyme called phosphodiesterase, and has been shown to protect brain tissue in animal models. . While considered a “New Chemical Entity” in the United States and Europe, ibudilast is marketed in Japan and Korea to treat asthma and symptoms from cerebrovascular disorders. It is being investigated in the U.S. for its potential to treat drug addiction and now, for treating progressive forms of MS. In a previous study, ibudilast did not reduce relapses or MRI-observed new lesions in a phase II trial involving people with relapsing MS. However, some evidence that this agent could protect the nervous system from damage (neuroprotection) was observed, which is why it’s being tested in people with progressive forms of MS. (Neurology 2010;74:1033).

Eligibility and Details: Participants are people between the ages of 21 and 65 who are diagnosed with secondary-progressive or primary-progressive MS who are currently receiving either glatiramer acetate, interferon beta, or neither treatment. . Further details on inclusion and exclusion criteria are available from the contact below.

Participants will be randomly assigned to receive either oral ibudilast (100 mg/day) or inactive placebo daily for 96 weeks. Treatment will be added to existing glatiramer or interferon treatment in patients currently taking those therapies. The primary outcomes being measured are changes in brain tissue volume loss (determined through MRI scans) and safety/tolerability. Secondary outcomes being measured include further imaging outcomes, progression as measured by the EDSS disability scale, quality of life, cognitive function, and pain.

Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please contact the study site nearest you, as listed on clinicaltrials.gov.

Sites will be enrolling in the following cities:
Atlanta, GA
Birmingham, AL
Boston, MA
Bronx, NY
Buffalo, NY
Charlottesville, VA
Chicago, IL
Cincinnati, OH
Cleveland, OH
Columbus, OH
Dallas, TX
Denver, CO
Kansas City, KS
Los Angeles, CA
Miami, FL
Nashville, TN
New York, NY
Pittsburgh, PA
Portland, OR
Rochester, NY
Sacramento, CA
Salt Lake City, UT
Seattle, WA
St. Louis, MO
Stony Brook, NY
Syracuse, NY

Study Suggests Adolescent Obesity and Genetic Factors Interact to Increase MS Risk

In a study comprising two large populations of people with MS and controls without MS, adolescent obesity was confirmed to increase a person’s risk for later developing multiple sclerosis, and this risk increased substantially in those with specific risk genes that control the immune system (known as HLA). Anna Karin Hedström, MD (Karolinska Institutet, Stockholm, Sweden) and colleagues in Sweden and California report their findings in Neurology (2014;82:1–8). More research is needed to confirm these results and to determine other risk factors that may help determine who is susceptible to MS and who is not.

Background: While MS is not contagious or directly inherited, epidemiologists—the scientists who study patterns of disease—have identified factors in the distribution of MS around the world that may eventually help determine what causes or triggers the disease. These factors include gender, genetics, age, geography, and ethnic background. The MS susceptibility genes identified to date are generally not clinically useful for providing genetic counseling to individuals regarding who may develop MS.

Because the prevalence of obesity has increased dramatically in the past several decades, and obesity is associated with an increase in immune system activity, researchers are seeking to determine if there was any association between obesity and the risk for developing MS.

Researchers recently reported that being overweight or obese was associated with an increased risk of developing MS or clinically isolated syndrome (CIS, a first clinical episode suggestive of MS, indicating increased MS risk) in girls, in a study that compared 75 children or teens with MS or CIS with the health records of more than 900,000 healthy children or teens (Neurology February 5, 2013 80:548-552).

The Study: Investigators used data from two studies on environmental and genetic risk factors, analyzing two populations: one that had 1,510 cases of MS and 2,017 controls without MS and another that comprised 937 cases and 609 controls. They obtained information on two genes previously associated with MS risk (the presence of “HLADRB1*15,” thought to increase MS risk, and absence of “HLA-A*02,” thought to be protective against MS), body mass index at age 20, and development of MS.

In both study populations, adolescent obesity was associated with increased risk of MS, as was the presence of HLADRB1*15or the absence of HLA-A*02. Participants who showed both adolescent obesity and either of the genetic risk factors had nearly an eight-fold increased risk of developing MS compared to those who were not obese in adolescence and who did not have any of the genetic risk factors.  However those who reported adolescent obesity and both of the genetic risk factors had a 16-fold or 14-fold increase in risk of MS.

Conclusions: This study adds to the growing body of evidence that adolescent obesity is a risk factor for developing MS. The authors note that “biologic explanations are far from clear,” but they suggest that immune mechanisms associated with obesity may be active in driving the disease in people who are genetically susceptible. Additional research is needed to understand this association. It is important to note that not everyone who is obese during adolescence will develop MS, and also that many people develop MS without having been obese during adolescence.

“We should be concerned about these findings,” cautions Ruth Ann Marrie, MD, PhD (University of Manitoba, Winnipeg, Canada) and Christopher A. Beck, PhD (University of Rochester Medical Center, NY) in an accompanying editorial. “It is time to begin developing a targeted approach to prevent MS by improving common health behaviors, including body weight and smoking.”

About Multiple Sclerosis

Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.

Visitors’ Choice Award–1st Place 2013

Visitors' Choice Award--1st Place 2013

Books in Sync Visitors’ Choice Award–1st Place 2013 for Mom’s Story, A Child Learns About MS.

Second edition of Mom’s Story listing new treatments to be available soon on Amazon, Barnes and Noble and http://www.marynickum.com

Mom’s Story

250_BBC_Award_Badge_-_2012Mom’s Story has received the Books in Sync 2012 Best Book Cover Award. Mom’s Story is available on Amazon, Barnes and Noble and http://www.marynickum.com

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