Publicity Summit to Help Children
Donation protected
The title of my request may seem a little strange: "Publicity Summit to Help Children" and if you don't know me personally, you may be wondering what exactly that means, and why it is important enough for you to donate to this cause. Basically, I need YOU to help ME let parents know about a commonly undiagnosed medical condition that is killing babies, putting children in wheelchairs and causing sensory processing issues for a large number of special needs children. I am talking about thousands of children who are suffering needlessly because of an easily correctable condition: trace mineral (micronutrient) deficiency.
You may be wondering why pediatricians aren't already sharing this information with their patients, and the answer is a simple one: they don't know about it. That may be hard to believe, but at the moment, it is the truth - when children start getting better (and I personally know of several hundred), right now the doctors chalk it up to "luck!"
I am The Mom who put the pieces together, and I need to get the word out to the parents who desperately need this information for their children:
- the premature baby who doesn't gain weight;
- the toddler who is developmentally delayed and not meeting appropriate milestones;
- the five year old who has to use a wheelchair to get through a day in kindergarten; and
- the autistic child who has a screaming meltdown when the noise in the classroom gets too loud.
You know these people, and you know the stress these parents are facing, and 4 out of 5 them (I have never been able to the numbers above 4 out of 5) can be helped *if* they find out about this soon enough because the younger they are, the faster they respond.
I don't sell anything, and have made a proud point of donating both my time and money to this effort for the last six and a half years. But I can't do it on my own anymore - I need your help.
I need to get to New York City for the National Publicity Summit October 7-10, 2015 (and hopefully for the three days of "free prep" prior) so I can be formally trained in how to speak in sound bytes (I still can't do an "elevator speech!"), tailor my message to different media with "one page" key summaries, practice/get critiqued on my public speaking (gulp!) and most importantly, spend two days interviewing with the producers of national television shows, editors of national magazines, and important people in both print and radio outlets. In my initial interviews for acceptance into this program I have already been told I have a compelling story, so I am hopeful this will be money well spent - if we can save even one child....
HOW THIS BEGAN:
How did I become an advocate for premature infants and special needs children? In 2007 I gave birth to premature 32-week boy/girl twins weighing approximately 4 lbs each. When they were 2 months old, I decided to add a small amount of liquid trace minerals to their bottles, and two months later, my preemies, who were not even on the normal growth charts when they were born, were in the 50th percentile for weight. By 6 months old, they were at the top of the growth charts for full-term babies for both weight and length - something that was supposed to take years.
As I said earlier, I put the pieces together and figured out I had inadvertently corrected an undiagnosed medical condition common to premature infants: micronutrient deficiency, which causes growth retardataion. Most premature babies (85%) self correct these deficiencies between one and two years of age when they start eating "real food" but not everyone is that "lucky" - fortunately, in 2011 a young boy with severe hypotonia ("floppy baby syndrome") demonstrated the link between these deficiencies and neuromuscular issues that eventually get mis-diagnosed as "cerebral palsy" when he started responding within 72 hours, then gained 10 pounds in 10 weeks, and started walking before his first birthday.
The final link in this chain of insight happened in 2012 when a young 9-year old girl born at 25-weeks weighing 1 pound 10 ounces at birth and diagnosed with spastic cerebral palsy saw tremendous improvement in reduction of hyperspasticity in her hands, healthy muscular weight gain, improved cognition and reduced sensory issues within a few weeks of starting the simple protocol. Most stunning of all was her improved mobility: she had previously been confined to a wheelchair due to her weak core strength, and with a short time she was walking and navigating stair on her own.
I am not sure what you would do with this type of information, especially with it being ignored by everyone you would think would be jumping up and down with joy about it, but I ended up leading a parent run feasibility study via the internet. I recruited 271 children from 35 states/6 countries who were suffering from neuromuscular issues ranging from cerebral palsy to sensory processing disorder, and collected solid data on 134 of them.
With an average tracking time of 4-months, 111 of the 134 (83%) saw improvement in a minimum of four of the eight categories tracked. One of the most exciting things to come out of it involved children with sensory processing issues - 4 out of 5 children, including an autism only subset, saw dramatic reduction in sensory issues by 16 weeks of the intervention.
WHAT I HAVE TO SAY:
The conclusions I came to were as follows:
Micronutrient deficiency results in growth retardation which includes:
- poor growth and appetite
- impaired immune responses
- weak muscles
- developmental delays
- and “general ill-thrift”
The same condition presents in different ways during the life cycle:
- At birth, as low birth weight or premature babies
- In infancy, as failure-to-thrive and developmental delays
- In childhood, the weak muscles (especially core) are (mis) diagnosed as cerebral palsy
- Deficiencies also present as other neuromuscular issues, including sensory processing issues
Risk Factors include:
- Maternal Deficiency
- Prematurity/Low Birth Weight
- Absorption Issues
- Malnutrition
- Teratogen Exposure
Symptoms include:
- Poor Growth and Appetite
- Impaired Immune Response
- Weak Muscles
- Developmental Delays
- Neuromuscular Issues, including Sensory Processing Disorder
I have been and will continue to advocate for these children, and if your instinct is to suggest I get some "real researchers" involved, well, you can buy me a nice cup of chocolate while I regale you with the tales of my efforts on that score. Obviously, I support rigorous scientific investigation to validate my findings, but bluntly, that is going to take decades (and I am six years into that/still working on it), and there are families who NEED this information right now. I can't let them suffer needlessly when the solution is so simple and safe: correct the (undiagnosed) deficiencies.
This National Publicity Summit event is NOT cheap, but I believe it is vital. I am attempting to raise $9,500 to cover my attendance. I know it is a lot to ask, but I am asking:
Help me get the word out. Help me reach them - the parents whose baby can't hold his head up, even though he is more than 8 months old, of the toddler who has been failure-to-thrive his entire life, of the young child with developmental delays and the ones who have sensory processing meltdowns multiple times a day - help me tell them about this.
I have never taken money from the families I have helped. I do not sell anything - I give the information to anyone who needs it free of charge, and I don't see that changing. Please help me help them. Please help me get the word out: there is hope, and if their child has this undiagnosed condition, correcting it will be the answer to their prayers.
Help their miracle happen. Please. I can't do this alone. I need you. Will you help me?
Thank you in advance.
FINAL NOTE: I have a website (last updated in 2013 when the feasibility study was ongoing) which will be updated with all of the information for the families before this event, assuming I am able to go. You can visit (or refer people) to Preemie Growth Project - that is www.preemiegrowthproject.org - when it was created back in 2009, I did not know what we would learn over the next six years, so...it isn't just for preemies anymore! :)
Also, I have made editing changes which hopefully make this a more coherant request - my children were interrupting my original train of thought, and I had to get the request up before I chickened out. Please forgive! Lol!
You may be wondering why pediatricians aren't already sharing this information with their patients, and the answer is a simple one: they don't know about it. That may be hard to believe, but at the moment, it is the truth - when children start getting better (and I personally know of several hundred), right now the doctors chalk it up to "luck!"
I am The Mom who put the pieces together, and I need to get the word out to the parents who desperately need this information for their children:
- the premature baby who doesn't gain weight;
- the toddler who is developmentally delayed and not meeting appropriate milestones;
- the five year old who has to use a wheelchair to get through a day in kindergarten; and
- the autistic child who has a screaming meltdown when the noise in the classroom gets too loud.
You know these people, and you know the stress these parents are facing, and 4 out of 5 them (I have never been able to the numbers above 4 out of 5) can be helped *if* they find out about this soon enough because the younger they are, the faster they respond.
I don't sell anything, and have made a proud point of donating both my time and money to this effort for the last six and a half years. But I can't do it on my own anymore - I need your help.
I need to get to New York City for the National Publicity Summit October 7-10, 2015 (and hopefully for the three days of "free prep" prior) so I can be formally trained in how to speak in sound bytes (I still can't do an "elevator speech!"), tailor my message to different media with "one page" key summaries, practice/get critiqued on my public speaking (gulp!) and most importantly, spend two days interviewing with the producers of national television shows, editors of national magazines, and important people in both print and radio outlets. In my initial interviews for acceptance into this program I have already been told I have a compelling story, so I am hopeful this will be money well spent - if we can save even one child....
HOW THIS BEGAN:
How did I become an advocate for premature infants and special needs children? In 2007 I gave birth to premature 32-week boy/girl twins weighing approximately 4 lbs each. When they were 2 months old, I decided to add a small amount of liquid trace minerals to their bottles, and two months later, my preemies, who were not even on the normal growth charts when they were born, were in the 50th percentile for weight. By 6 months old, they were at the top of the growth charts for full-term babies for both weight and length - something that was supposed to take years.
As I said earlier, I put the pieces together and figured out I had inadvertently corrected an undiagnosed medical condition common to premature infants: micronutrient deficiency, which causes growth retardataion. Most premature babies (85%) self correct these deficiencies between one and two years of age when they start eating "real food" but not everyone is that "lucky" - fortunately, in 2011 a young boy with severe hypotonia ("floppy baby syndrome") demonstrated the link between these deficiencies and neuromuscular issues that eventually get mis-diagnosed as "cerebral palsy" when he started responding within 72 hours, then gained 10 pounds in 10 weeks, and started walking before his first birthday.
The final link in this chain of insight happened in 2012 when a young 9-year old girl born at 25-weeks weighing 1 pound 10 ounces at birth and diagnosed with spastic cerebral palsy saw tremendous improvement in reduction of hyperspasticity in her hands, healthy muscular weight gain, improved cognition and reduced sensory issues within a few weeks of starting the simple protocol. Most stunning of all was her improved mobility: she had previously been confined to a wheelchair due to her weak core strength, and with a short time she was walking and navigating stair on her own.
I am not sure what you would do with this type of information, especially with it being ignored by everyone you would think would be jumping up and down with joy about it, but I ended up leading a parent run feasibility study via the internet. I recruited 271 children from 35 states/6 countries who were suffering from neuromuscular issues ranging from cerebral palsy to sensory processing disorder, and collected solid data on 134 of them.
With an average tracking time of 4-months, 111 of the 134 (83%) saw improvement in a minimum of four of the eight categories tracked. One of the most exciting things to come out of it involved children with sensory processing issues - 4 out of 5 children, including an autism only subset, saw dramatic reduction in sensory issues by 16 weeks of the intervention.
WHAT I HAVE TO SAY:
The conclusions I came to were as follows:
Micronutrient deficiency results in growth retardation which includes:
- poor growth and appetite
- impaired immune responses
- weak muscles
- developmental delays
- and “general ill-thrift”
The same condition presents in different ways during the life cycle:
- At birth, as low birth weight or premature babies
- In infancy, as failure-to-thrive and developmental delays
- In childhood, the weak muscles (especially core) are (mis) diagnosed as cerebral palsy
- Deficiencies also present as other neuromuscular issues, including sensory processing issues
Risk Factors include:
- Maternal Deficiency
- Prematurity/Low Birth Weight
- Absorption Issues
- Malnutrition
- Teratogen Exposure
Symptoms include:
- Poor Growth and Appetite
- Impaired Immune Response
- Weak Muscles
- Developmental Delays
- Neuromuscular Issues, including Sensory Processing Disorder
I have been and will continue to advocate for these children, and if your instinct is to suggest I get some "real researchers" involved, well, you can buy me a nice cup of chocolate while I regale you with the tales of my efforts on that score. Obviously, I support rigorous scientific investigation to validate my findings, but bluntly, that is going to take decades (and I am six years into that/still working on it), and there are families who NEED this information right now. I can't let them suffer needlessly when the solution is so simple and safe: correct the (undiagnosed) deficiencies.
This National Publicity Summit event is NOT cheap, but I believe it is vital. I am attempting to raise $9,500 to cover my attendance. I know it is a lot to ask, but I am asking:
Help me get the word out. Help me reach them - the parents whose baby can't hold his head up, even though he is more than 8 months old, of the toddler who has been failure-to-thrive his entire life, of the young child with developmental delays and the ones who have sensory processing meltdowns multiple times a day - help me tell them about this.
I have never taken money from the families I have helped. I do not sell anything - I give the information to anyone who needs it free of charge, and I don't see that changing. Please help me help them. Please help me get the word out: there is hope, and if their child has this undiagnosed condition, correcting it will be the answer to their prayers.
Help their miracle happen. Please. I can't do this alone. I need you. Will you help me?
Thank you in advance.
FINAL NOTE: I have a website (last updated in 2013 when the feasibility study was ongoing) which will be updated with all of the information for the families before this event, assuming I am able to go. You can visit (or refer people) to Preemie Growth Project - that is www.preemiegrowthproject.org - when it was created back in 2009, I did not know what we would learn over the next six years, so...it isn't just for preemies anymore! :)
Also, I have made editing changes which hopefully make this a more coherant request - my children were interrupting my original train of thought, and I had to get the request up before I chickened out. Please forgive! Lol!
Organizer
Ida Briggs
Organizer
Farmington Hills, MI
