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books based on 16 votes: Break The Spell by A.M. Bostwick, Mom's Story,
A Child Learns About MS by Mary Jo Nickum, Multiple Sclerosis: The
Questions Y...
goodreads.com
Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com
Showing posts with label Mom's Story. Show all posts
Showing posts with label Mom's Story. Show all posts
Wednesday, January 31, 2018
Tuesday, March 17, 2015
Tuesday, March 18, 2014
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
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
Saturday, July 31, 2010
Mom's Story Event
The program at the Microsoft Store was fabulous. In addition to my videotaped interview, the Vice President, Programs & Services of the Arizona Chapter for the National Multiple Sclerosis Society attended, providing useful information about the Society and its services. Everyone who attended received a complimentary teeshirt from Microsoft. The video will be available on YouTube soon.
Friday, July 30, 2010
Tuesday, July 27, 2010
Mom's Story Event
Preparing for the event at Microsoft Store. I'll do a "dry-run" on the interview and reading with a colleague. This will give us a time measure and iron out any wrinkles. I've already connected with the Microsoft Store Event Team. We're almost ready to go. Hope to see you on Friday, July 30 at 6:00 pm.
Sunday, July 25, 2010
The Microsoft Store Event
On July 30th from 6:00-8:00 PM the Microsoft Store will be hosting an event on multiple sclerosis (MS). Mary Jo Nickum will discuss Mom’s Story; A Child Learns About MS.
Monday, July 5, 2010
Slide Show
I just updated my slide show for Mom's Story: http://wwww.slideshare.net/mjnickum/moms-story-4630169
Thursday, June 10, 2010
The Microsoft Store and Mom's Story
The Microsoft Store will be hosting an event for kids and families that have or know someone with Multiple Sclerosis (MS) on July 30th, 2010 from 6:00-8:00 PM. You will have the opportunity to meet with Mary Jo Nickum, author of Mom’s Story; A Child Learns About MS. Mary has been diagnosed with MS for over 30 years and is an inspiration for all of those learning to cope with this challenging disease. Her book provides information on how to better understand MS, who gets it, how the disease is diagnosed, the various forms of MS and listing of material and organizations available to assist families in the fight against MS. While parents are learning from Mary Jo in the theatre area, the kids will be provided with fun activities to learn more about the store and the technology used in everyday life. They will even be introduced to future technology through an entirely interactive experience with the staff! We hope to see you there!
When: Friday July 30th, 2010
Welcome time: 6:00-6:30
Event time: 6:30-8:00pm
Where: The Microsoft Store
Scottsdale Fashion Square Mall
7014 E. Camelback Rd.
Scottsdale, AZ 85251
(480) 308-0800
Light Refreshments will be provided
**RSVP: Space is limited for this event, so please do not wait to RSVP.
RSVP: https://www.clicktoattend.com/invitation.aspx?code=149256
When: Friday July 30th, 2010
Welcome time: 6:00-6:30
Event time: 6:30-8:00pm
Where: The Microsoft Store
Scottsdale Fashion Square Mall
7014 E. Camelback Rd.
Scottsdale, AZ 85251
(480) 308-0800
Light Refreshments will be provided
**RSVP: Space is limited for this event, so please do not wait to RSVP.
RSVP: https://www.clicktoattend.com/invitation.aspx?code=149256
Tuesday, June 1, 2010
Mom's Story, A Child Learns About MS
I'm working hard on designing teaching materials for Mom's Story. Any suggestions would be appreciated. Thanks.
Wednesday, May 26, 2010
Biomarkers Test for MS Nine Years Before Symptoms Appear
A small study analyzing the blood of healthy people who developed MS, along with the blood of those who did not, has uncovered “blood signatures” that may lead to a diagnosis of MS before symptoms appear, and consequently earlier and more effective intervention.
"We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power," says Anat Achiron, a professor of Tel Aviv University's Sackler Faculty of Medicine and vice-dean of research at Sheba Medical Center. "Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on. We can diagnose MS by brain MRI, but we've never been able to know how 'fresh' the disease is."
If doctors can predict the onset of MS early enough, intervention therapies using immunomodulatory drugs or beta-interferon drugs that stave off MS symptoms might be used.
Examining blood samples of twenty19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS, Achiron and her team at Sheba were able to use a "high throughput analysis" using more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers.
"Those who will develop MS will show a different blood signature from those who will not," says Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes."
These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron says the biomarkers can be used as a tool for brothers and sisters of people with MS. The goal is to learn more about the genetics of MS through this new discovery, with the hope that early intervention therapies may be more effective, and help advance medicine toward a cure, according to Achiron.
Typically by the time a person notices symptoms, significant and irreversible nerve damage is already done.
MSFoundation
"We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power," says Anat Achiron, a professor of Tel Aviv University's Sackler Faculty of Medicine and vice-dean of research at Sheba Medical Center. "Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on. We can diagnose MS by brain MRI, but we've never been able to know how 'fresh' the disease is."
If doctors can predict the onset of MS early enough, intervention therapies using immunomodulatory drugs or beta-interferon drugs that stave off MS symptoms might be used.
Examining blood samples of twenty19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS, Achiron and her team at Sheba were able to use a "high throughput analysis" using more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers.
"Those who will develop MS will show a different blood signature from those who will not," says Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes."
These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron says the biomarkers can be used as a tool for brothers and sisters of people with MS. The goal is to learn more about the genetics of MS through this new discovery, with the hope that early intervention therapies may be more effective, and help advance medicine toward a cure, according to Achiron.
Typically by the time a person notices symptoms, significant and irreversible nerve damage is already done.
MSFoundation
Wednesday, May 12, 2010
With MS, am I going to end up in a wheelchair?
The natural course of MS is highly variable, and it is impossible to predict the nature, severity or timing of progression in a given patient. Some people with MS will have a more progressive disease course than others.
In some cases, the course of MS over the first five years may provide a clue to the progression of the disease over the next 10 years. Recent studies indicate that 90% of patients with minimal disability five years after onset were still ambulatory at 15 years. It is estimated that at 20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device.
With the present immunomodulatory therapies, the goal is to slow the progression of disability. Some people with MS respond quite well and may have no progression over years. For others, the treatment may slow, but not stop the progression. It is important to be proactive and work with your healthcare provider in order to obtain the most appropriate treatment, thus obtaining the highest level of benefit.
In some cases, the course of MS over the first five years may provide a clue to the progression of the disease over the next 10 years. Recent studies indicate that 90% of patients with minimal disability five years after onset were still ambulatory at 15 years. It is estimated that at 20 years after diagnosis, about 1/3 of people who receive no treatment may require a wheelchair or other assistive device.
With the present immunomodulatory therapies, the goal is to slow the progression of disability. Some people with MS respond quite well and may have no progression over years. For others, the treatment may slow, but not stop the progression. It is important to be proactive and work with your healthcare provider in order to obtain the most appropriate treatment, thus obtaining the highest level of benefit.
Thursday, May 6, 2010
Monday, May 3, 2010
Multiple Sclerosis Question 4
Symptoms of Multiple Sclerosis
Common symptoms of MS include fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, tremors and depression.
Not all symptoms affect all MS patients. No two persons have the same complaints; no one develops all of the symptoms.
Symptoms may be persistent or may cease from time to time. Most patients have episodic patterns of attacks and remissions throughout the disease course. Symptoms may remit completely, leaving no residual damage, or partially leaving degrees of permanent impairment.
Because the symptoms that define the clinical picture of MS are the result of nerve lesions causing disturbances in electrical conduction in one or more areas of the CNS, the nature of the symptoms that occur is determined by the location of the lesion. For example: an optic nerve lesion may cause blurred vision; a brain stem lesion may cause dizziness or double vision; a spinal cord lesion may cause coordination/balance problems.
Common symptoms of MS include fatigue, weakness, spasticity, balance problems, bladder and bowel problems, numbness, vision loss, tremors and depression.
Not all symptoms affect all MS patients. No two persons have the same complaints; no one develops all of the symptoms.
Symptoms may be persistent or may cease from time to time. Most patients have episodic patterns of attacks and remissions throughout the disease course. Symptoms may remit completely, leaving no residual damage, or partially leaving degrees of permanent impairment.
Because the symptoms that define the clinical picture of MS are the result of nerve lesions causing disturbances in electrical conduction in one or more areas of the CNS, the nature of the symptoms that occur is determined by the location of the lesion. For example: an optic nerve lesion may cause blurred vision; a brain stem lesion may cause dizziness or double vision; a spinal cord lesion may cause coordination/balance problems.
Saturday, April 24, 2010
Mom's Story is available
I will be attending "Talk MS" on May 1 at Doubletree Paradise Valley Resort. Mom's Story will be available there.
Friday, April 23, 2010
Multiple Sclerosis Question 3
Who Gets Multiple Sclerosis?
Statistics indicate that there are currently 350,000 to 500,000 people in the U.S. who have been diagnosed with MS. Two hundred people are diagnosed with MS every week and over 2.5 million people are living with the disease worldwide. However, because the Centers for Disease Control and Prevention does not require U.S. physicians to report new cases of MS and the symptoms of the disease can go unrecognized for some time, these numbers are only estimates.
MS is more common in women, appears more frequently in Caucasians than in Hispanics or African Americans, and is relatively rare among Asians and certain other ethnic groups. MS is most commonly diagnosed in individuals between the ages of 20 and 50, although it can develop in young children and teens as well as older adults.
Statistics indicate that there are currently 350,000 to 500,000 people in the U.S. who have been diagnosed with MS. Two hundred people are diagnosed with MS every week and over 2.5 million people are living with the disease worldwide. However, because the Centers for Disease Control and Prevention does not require U.S. physicians to report new cases of MS and the symptoms of the disease can go unrecognized for some time, these numbers are only estimates.
MS is more common in women, appears more frequently in Caucasians than in Hispanics or African Americans, and is relatively rare among Asians and certain other ethnic groups. MS is most commonly diagnosed in individuals between the ages of 20 and 50, although it can develop in young children and teens as well as older adults.
Thursday, April 8, 2010
Radio show
My blog radio show appearance is today at 3 pm (PDT) www.blogtalkradio.com/rrradio/2010/04/08/red-river-writers-live-no-limits. I'll be discussing Mom's Story, writing for children and anything else that comes up. It is a call-in, I'd love to hear from you all.
Tuesday, April 6, 2010
Mom's Story
http://www.msandyourchild.com/ will also take you to the site where you can order Mom's Story, A Child Learns About MS
Monday, April 5, 2010
Blog Radio Show
My next blog radio show appearance will be April 8 at 3 pm (PDT) on www.blogtalkradio.com/rrradio/2010/04/08/red-river-writers-live-no-limits
Saturday, April 3, 2010
Goodreads give-away
Happy Easter! Goodreads Drawing winners for Mom's Story were from Russia and Israel. Thanks to all who entered!
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