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Monday, May 31, 2010
Standing Barbells Curls for Biceps
The Proper technique for working biceps with a cambered bar. The three keys to the exercise are:
1) Keep your elbows at your side.
2) Lift the barbell slowly up and down to keep constant tension on the biceps.
3) Do not rest or throw the bar into your chest at the top of the movement.
Thursday, May 27, 2010
Joseph James Colton
Joseph James Colton
May 18, 2005 - May 19, 2010
Joseph enjoyed birthday parties, listening to music while dancing in his chair, hanging out in his community pool, taking morning or evening walks through his neighborhood and stopping to toss acorns into the water from the bridges.
We can all learn from Joseph's example how to embrace the simple pleasures available to us in each precious day. While his life was far too short, it was a life well-enjoyed and well-lived.
Our deepest sympathies go out to Joseph's family and friends in their loss.
May 18, 2005 - May 19, 2010
It is with great sadness that we pass along news of the passing of little Joseph Colton, the son of James and Alexa Colton of Florida. Joseph James Colton, 5 years old, passed away on Wednesday, May 19th due to conditions resulting from Niemann- Pick Disease Type A/B.
Joseph was a happy child from the day he was born until the day he died. His enthusiastic smile brightened the room. Joseph loved to attend his brother's baseball and football games, watching and rooting for the teams to score.
Joseph was a happy child from the day he was born until the day he died. His enthusiastic smile brightened the room. Joseph loved to attend his brother's baseball and football games, watching and rooting for the teams to score.
Joseph enjoyed birthday parties, listening to music while dancing in his chair, hanging out in his community pool, taking morning or evening walks through his neighborhood and stopping to toss acorns into the water from the bridges.
We can all learn from Joseph's example how to embrace the simple pleasures available to us in each precious day. While his life was far too short, it was a life well-enjoyed and well-lived.
Our deepest sympathies go out to Joseph's family and friends in their loss.
For more information about Niemann-Pick Disease, please visit the NNPDF Web site.
Tuesday, May 25, 2010
Ironman Competitor to Raise Funds for Niemann-Pick Disease!
Ironman Mike Smith of Florida will compete in the Ford Ironman Triathlon in Coeur d'Alene (Idaho)on Sunday, June 27, to raise money and awareness for the National Niemann-Pick Disease Foundation.
The triathlon is the ultimate test of strength, endurance and determination, consisting of swimming 2.4 miles, biking 112 miles, and running 26.2 miles. An Ironman certainly embodies the NNPDF motto -- "Persevere!"
Mike's fundraising goal is $3,000 and he hopes to raise enough to qualify for a Janus matching fund donation, as well. Visit Mike's page to make a donation and read more about his motivation -- his vivacious wife, Annie OConnor-Smith, who is affected by Niemann-Pick Disease Type B.
Visit the National Niemann-Pick Disease Foundation's Web site to learn more about Niemann-Pick Disease and how you can help advance our Quest for a Cure!
The triathlon is the ultimate test of strength, endurance and determination, consisting of swimming 2.4 miles, biking 112 miles, and running 26.2 miles. An Ironman certainly embodies the NNPDF motto -- "Persevere!"
Mike's fundraising goal is $3,000 and he hopes to raise enough to qualify for a Janus matching fund donation, as well. Visit Mike's page to make a donation and read more about his motivation -- his vivacious wife, Annie OConnor-Smith, who is affected by Niemann-Pick Disease Type B.
Visit the National Niemann-Pick Disease Foundation's Web site to learn more about Niemann-Pick Disease and how you can help advance our Quest for a Cure!
Gene Marker Test
So today I did the gene marker tests at Sonora Lab. They spin the blood on ice and send it to
California....and in about 10 days they will have the results back. Dr. Burzynski will determine if
there are cancer cells left in the body and if so, if they are over expressing proteins. This week is
also my ct/pet scan and then I'm off to the clinic in Houston Texas for an appointment on June
3rd. In the mean time, we are organizing our home and enjoying our lively little chihuahua
named Cookie.
I was actually sick for the last 3 weeks with a sore throat and am finally feeling better.
Yeah!!
California....and in about 10 days they will have the results back. Dr. Burzynski will determine if
there are cancer cells left in the body and if so, if they are over expressing proteins. This week is
also my ct/pet scan and then I'm off to the clinic in Houston Texas for an appointment on June
3rd. In the mean time, we are organizing our home and enjoying our lively little chihuahua
named Cookie.
I was actually sick for the last 3 weeks with a sore throat and am finally feeling better.
Yeah!!
Monday, May 24, 2010
Saturday, May 22, 2010
FDA grants “Orphan Drug Designation” to Cyclodextrin for treatment of Niemann-Pick Disease Type C
Due to the efforts of Hugh and Chris Hempel, Dr. Caroline Hastings and Ron Browne, an application to the Food and Drug Administration requesting “Orphan Drug Status” for cyclodextrin has been approved.
What exactly does that mean for our NPD community?
It is important to emphasize that an Orphan designation does not make any assessment at all on how the drug works in clinical trials, whether it is safe or effective in patients, nor whether it will ever be commercially available – the Orphan designation’s main purpose is to make the development of the drug more financially viable for the developer.
Please visit the NNPDF's cyclodextrin page for a bit of background and glossary terms that will help you to understand this latest development.
What exactly does that mean for our NPD community?
It is important to emphasize that an Orphan designation does not make any assessment at all on how the drug works in clinical trials, whether it is safe or effective in patients, nor whether it will ever be commercially available – the Orphan designation’s main purpose is to make the development of the drug more financially viable for the developer.
Please visit the NNPDF's cyclodextrin page for a bit of background and glossary terms that will help you to understand this latest development.
Friday, May 21, 2010
Dumbbell Concentration Curls for Biceps
Check out the next installment of our how-to video exercise series. This one shows the proper form and benefits of dumbbell concentration curls for biceps. Perform this exercise correctly and you will notice a tremendous improvement in biceps strength, tone, and shape.
18th Annual NNPDF Family Support and Medical Conference
Register now for the National Niemann-Pick Disease Foundation's 18th Annual Family Support and Medical Conference, scheduled for Thursday, August 5th through Sunday, August 8th, 2010!
This year's conference will be held in Toronto, Ontario, Canada, co-hosted by our sister chapter, the Canadian Chapter of the National Niemann-Pick Disease Foundation.
The NNPDF Family Conference is your best opportunity to learn the latest information about Niemann-Pick Disease directly from the eminent experts in the field, including physicians, researchers and scientists.
You will also meet, make friends, and have fun with many other families who are facing the challenges of NPD. We promise, you will remember forever the family connections you make at the Family Conference.
Family Conference registration packets were mailed out to NNPDF and CCNNPDF members last week. If you did not receive a packet, contact the NNPDF Central Office, or access the registration packet via the Family Conference page of the NNPDF Web site.
The Family Conference page is chock-full of information about the conference, including a conference schedule-at-a-glance, international travel tips, hotel reservation info, etc.
The deadline for registration is July 1st, so don't delay! Mark your calendar for Toronto, and start making plans to attend.
This year's conference will be held in Toronto, Ontario, Canada, co-hosted by our sister chapter, the Canadian Chapter of the National Niemann-Pick Disease Foundation.
The NNPDF Family Conference is your best opportunity to learn the latest information about Niemann-Pick Disease directly from the eminent experts in the field, including physicians, researchers and scientists.
You will also meet, make friends, and have fun with many other families who are facing the challenges of NPD. We promise, you will remember forever the family connections you make at the Family Conference.
Family Conference registration packets were mailed out to NNPDF and CCNNPDF members last week. If you did not receive a packet, contact the NNPDF Central Office, or access the registration packet via the Family Conference page of the NNPDF Web site.
The Family Conference page is chock-full of information about the conference, including a conference schedule-at-a-glance, international travel tips, hotel reservation info, etc.
The deadline for registration is July 1st, so don't delay! Mark your calendar for Toronto, and start making plans to attend.
Thursday, May 20, 2010
Berbagai Ramuan Untuk Mengeluarkan Dahak
Dari sekian banyak ramuan yang berguna untuk menyembuhkan penyakit adalah obat batuk. Batuk merupakan penyakit sehari-hari namun apabila tidak lekas disembuhkan dapat pula menjadi penyakit yang mematikan. Berikut ini kami sajikan ramuan untuk penyembuhan batuk, khususnya batuk yang berdahak.
Ramuan 1
Bahannya :
- 30 biji Cengkeh
- 3 sendok makan kecap manis
- ½ gelas air
Cara membuatnya :
Setelah dicuci, rebus biji cengkeh hingga airnya mendidih, angkat dan masukkan kecap manis lalu tutup. Setelah dingin, minum seperti obat batuk (1/2 sampai dengan 1 sendok makan) 3 kali sehari. Ulang sampai sembuh.
Ramuan 2
Bahannya :
- Segenggam bunga Belimbing Wuluh
- Garam sedikit
- 1 gelas air
Cara membuatnya :
Siram bunga belimbing Wuluh dengan air hangat, kemudian rebus dan tambahkan garam. Setelah dingin minumkan. Cukup 1 sendok teh, 3 kali sehari.
Ramuan 3
Bahannya :
- 2 lembar daun Sirih
- 1 sendok makan daun Saga
- 1 potong kecil Akar Wangi
- 5 butir Cengkeh
- 7 Kapulaga
- Sedikit Adas
- 1 gelas air
- 1 sendok makan Madu
Cara membuatnya :
Setelah semua bahan dicuci, lalu rebus hingga airnya tersisa setengahnya. Tambahkan Madu 1 sendok makan dan minum selagi hangat-hangat kuku, 3 kali dalam sehari.
Ramuan 4
Bahannya :
- 8 gr rimpang Kencur segar
- 2 lembar daun Sirih segar
- 2 gr buah Adas
- 4 gr daun Saga segar
- ½ gr Kemukus
- ½ Kapulaga
- 135 ml air
Cara membuatnya :
Setelah dicuci bersih, rebus semua ramuan tersebut diatas hingga mendidih. Setelah dingin, minum. Lakukan 2 kali sehari, pagi dan sore dan setiap minum 50 ml. Lakukan selama 14 hari.
Ramuan 5
Bahannya :
- ½ gr rimpang Bangle hantu
- 5 gr daun Saga
- 110 ml air
Cara membuatnya :
Setelah bahan diatas dicuci, rebus sampai mendidih. Setelah dingin, minum pada pagi dan sore masing-masing 100 ml. Lakukan sampai benar-benar sembuh.
Ramuan 6
Bahannya :
- 4 gr umbi Bawang Merah
- 4 gr daun Poko segar
- 3 gr daun Sembuh segar
- 4 gr Pegagan segar
- 2 gr buah Adas
- 125 ml air
Cara membuatnya :
Setelah dicuci, rebus sampai mendidih. Setelah dingin, tiap pagi minum sehari sekali 100 ml. Lakukan selama 14 hari.
Ramuan 7
Bahannya :
- Bagian dalam daun Lidah Buaya secukupnya
- Sirop secukupnya
Cara membuatnya :
Kupas kulit daun Lidah Buaya, lalu campurkan dengan Sirop. Minum 2 kali sehari pada pagi dan sore, masing-masing 1 sendok makan.
Ramuan 1
Bahannya :
- 30 biji Cengkeh
- 3 sendok makan kecap manis
- ½ gelas air
Cara membuatnya :
Setelah dicuci, rebus biji cengkeh hingga airnya mendidih, angkat dan masukkan kecap manis lalu tutup. Setelah dingin, minum seperti obat batuk (1/2 sampai dengan 1 sendok makan) 3 kali sehari. Ulang sampai sembuh.
Ramuan 2
Bahannya :
- Segenggam bunga Belimbing Wuluh
- Garam sedikit
- 1 gelas air
Cara membuatnya :
Siram bunga belimbing Wuluh dengan air hangat, kemudian rebus dan tambahkan garam. Setelah dingin minumkan. Cukup 1 sendok teh, 3 kali sehari.
Ramuan 3
Bahannya :
- 2 lembar daun Sirih
- 1 sendok makan daun Saga
- 1 potong kecil Akar Wangi
- 5 butir Cengkeh
- 7 Kapulaga
- Sedikit Adas
- 1 gelas air
- 1 sendok makan Madu
Cara membuatnya :
Setelah semua bahan dicuci, lalu rebus hingga airnya tersisa setengahnya. Tambahkan Madu 1 sendok makan dan minum selagi hangat-hangat kuku, 3 kali dalam sehari.
Ramuan 4
Bahannya :
- 8 gr rimpang Kencur segar
- 2 lembar daun Sirih segar
- 2 gr buah Adas
- 4 gr daun Saga segar
- ½ gr Kemukus
- ½ Kapulaga
- 135 ml air
Cara membuatnya :
Setelah dicuci bersih, rebus semua ramuan tersebut diatas hingga mendidih. Setelah dingin, minum. Lakukan 2 kali sehari, pagi dan sore dan setiap minum 50 ml. Lakukan selama 14 hari.
Ramuan 5
Bahannya :
- ½ gr rimpang Bangle hantu
- 5 gr daun Saga
- 110 ml air
Cara membuatnya :
Setelah bahan diatas dicuci, rebus sampai mendidih. Setelah dingin, minum pada pagi dan sore masing-masing 100 ml. Lakukan sampai benar-benar sembuh.
Ramuan 6
Bahannya :
- 4 gr umbi Bawang Merah
- 4 gr daun Poko segar
- 3 gr daun Sembuh segar
- 4 gr Pegagan segar
- 2 gr buah Adas
- 125 ml air
Cara membuatnya :
Setelah dicuci, rebus sampai mendidih. Setelah dingin, tiap pagi minum sehari sekali 100 ml. Lakukan selama 14 hari.
Ramuan 7
Bahannya :
- Bagian dalam daun Lidah Buaya secukupnya
- Sirop secukupnya
Cara membuatnya :
Kupas kulit daun Lidah Buaya, lalu campurkan dengan Sirop. Minum 2 kali sehari pada pagi dan sore, masing-masing 1 sendok makan.
Labels:
Batuk Rejan
Wednesday, May 19, 2010
The Proper Technique for Abdominal Leg Raises
Instructional Video By Unique Fitness Concepts showing the step by step technique for abdominal leg raises. The keys to this exercise are the following:
1) Keep your knees slightly bent and your legs together.
2) Ascend and descend slowly.
3) Pause and contract your abs at the top of the movement.
Monday, May 17, 2010
Lessons I've learned
This past year with cancer has taught me a lot and people have asked
what I have learned.
So, I will share some of the most important things.
First, God lives and loves each of His children regardless our faith, color, or
religion.
I have met or talked with so many cancer patients that come from different faiths,
countries, etc. and they have expressed that they were guided to the Burzynski
Clinic from God. (The clinic where I go for my cancer treatment)
God cares for all of His children. He doesn't just care for those that are members
of our faith. He hears and answers all of their prayers if they ask in faith, believing
that they will receive direction.
Secondly, Faith in God is a real power. Just as magnetism is not seen but you can
feel the effects of it....so faith is not seen but the effects can be felt. Seeing with the
natural eye and hearing with our ears is not a sure way of knowing something. Our
physical bodies are imperfect and can deceive us at times. God uses the Holy Ghost
to speak to our spirits so that we can have a more sure knowledge of truth.
Learning to put our trust in God is what this earth life is all about and when we do
put our trust in God then we are strengthened beyond any earthly ability we may
have. I was told by the best oncologists that there was nothing I could do for this
particular kind of cancer. I had an average of 3 years left to live if I did the
strongest chemo in the hospital and bone marrow transplant twice. No one has
had success with living very long with mantle cell non-hodgkins lymphoma cancer.
I decided to put my trust in God and not in science. God directed me another way
that was not traditional medicine. My oncologist has decided to work hand in hand
with Dr. Burzynski because he knew that he could offer me no hope. I am in
remission and will find out in a few weeks if it is complete remission yet. I have
never doubted that I would get all the way better because God witnessed to my
spirit that I would be healed.
I testify that God lives, He loves all of His children no matter what color and what
circumstance they may be in. I have been blessed with tremendous peace and
strength beyond my own through this cancer experience. I know that Jesus Christ
atoned for our sins and that He is the way back to our Heavenly Father. I also
know by the spirit that Pres. Monson is God's mouthpiece and speaks His words to
us today. Life is wonderful. The Gospel is true. The scriptures bring the Spirit and
have sustained me and have fed my spirit through this whole ordeal. I love to feast
upon them daily. Just as our bodies need nourishment, so do our spirits. I am so
grateful to be a member of God's true church and want everyone to have the
blessings that I enjoy because of it.
Thank you for your prayers and example and to me.
what I have learned.
So, I will share some of the most important things.
First, God lives and loves each of His children regardless our faith, color, or
religion.
I have met or talked with so many cancer patients that come from different faiths,
countries, etc. and they have expressed that they were guided to the Burzynski
Clinic from God. (The clinic where I go for my cancer treatment)
God cares for all of His children. He doesn't just care for those that are members
of our faith. He hears and answers all of their prayers if they ask in faith, believing
that they will receive direction.
Secondly, Faith in God is a real power. Just as magnetism is not seen but you can
feel the effects of it....so faith is not seen but the effects can be felt. Seeing with the
natural eye and hearing with our ears is not a sure way of knowing something. Our
physical bodies are imperfect and can deceive us at times. God uses the Holy Ghost
to speak to our spirits so that we can have a more sure knowledge of truth.
Learning to put our trust in God is what this earth life is all about and when we do
put our trust in God then we are strengthened beyond any earthly ability we may
have. I was told by the best oncologists that there was nothing I could do for this
particular kind of cancer. I had an average of 3 years left to live if I did the
strongest chemo in the hospital and bone marrow transplant twice. No one has
had success with living very long with mantle cell non-hodgkins lymphoma cancer.
I decided to put my trust in God and not in science. God directed me another way
that was not traditional medicine. My oncologist has decided to work hand in hand
with Dr. Burzynski because he knew that he could offer me no hope. I am in
remission and will find out in a few weeks if it is complete remission yet. I have
never doubted that I would get all the way better because God witnessed to my
spirit that I would be healed.
I testify that God lives, He loves all of His children no matter what color and what
circumstance they may be in. I have been blessed with tremendous peace and
strength beyond my own through this cancer experience. I know that Jesus Christ
atoned for our sins and that He is the way back to our Heavenly Father. I also
know by the spirit that Pres. Monson is God's mouthpiece and speaks His words to
us today. Life is wonderful. The Gospel is true. The scriptures bring the Spirit and
have sustained me and have fed my spirit through this whole ordeal. I love to feast
upon them daily. Just as our bodies need nourishment, so do our spirits. I am so
grateful to be a member of God's true church and want everyone to have the
blessings that I enjoy because of it.
Thank you for your prayers and example and to me.
Saturday, May 15, 2010
Weight Training and Cardio Complement Each Other Well
In ancient bodybuilding times (prior to the 80's) it was often believed that the bodybuilder should not incorporate cardio training into their workout regiment to prevent the burning of too many calories and resulting in limited bodybuilding gains or "getting small". As we've all subsequently learned this train of thought could not be further from the truth. Cardio and weight training complement each other extremely well and should always be included as part of your training routine. Cardio training gives you the necessary stamina for weight training and weight training offers added strength and toning for optimal cardio performance.
Nowadays all competitive bodybuilders rely heavily on cardio training in addition to diet to burn fat. There is a fine line between burning fat instead of muscle and experience will teach you what your targeted heart rate should be for optimal fat burning. Just compare some of the smoother bodybuilder of the 70's to the champions today and you will see exactly what I mean regarding the correct cardio mix.
Thursday, May 13, 2010
"Promising Therapies for Niemann-Pick Type C Disease"
NIH (NINDS) to Sponsor Meeting
June 3 - 4, 2010
The National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) is sponsoring a meeting in early June titled "Promising Therapies for Niemann-Pick Disease Type C Disease."
This meeting, set for June 3 - 4, at the Rockville, Maryland Hilton Hotel, is open to scientists, physicians and families until the maximum registration has been reached.
For more information, including the tentative agenda, travel and lodging information and a link to register, please visit our NewsLine page.
NIH (NINDS) to Sponsor Meeting
June 3 - 4, 2010
The National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) is sponsoring a meeting in early June titled "Promising Therapies for Niemann-Pick Disease Type C Disease."
This meeting, set for June 3 - 4, at the Rockville, Maryland Hilton Hotel, is open to scientists, physicians and families until the maximum registration has been reached.
For more information, including the tentative agenda, travel and lodging information and a link to register, please visit our NewsLine page.
Labels:
meeting,
niemann-pick,
NIH,
NINDS,
therapies
Dr. Burzynski
Take a look at these news clips about Dr. Burzynski. He is becoming more well known
and I am so grateful for all he has done for so many patients...including me.
:) Margaret
http://www.khou.com/great-day/gdh_051210_seg1-93591354.html
and I am so grateful for all he has done for so many patients...including me.
:) Margaret
http://www.khou.com/great-day/
Monday, May 10, 2010
Mother's Day
I'm excited to hear from our missionary son, Thomas, today. He will be calling from Washington
this afternoon.
It will be great to hear his voice and to feel of his spirit. Every year, I ask my kids and their
spouses to stand up and sing my favorite hymn to me and I'm looking forward to hearing them
sing it today. It's "I Know That My Redeemer Lives." They are all coming over for dinner today
(all that are in state) My children bring great joy to me as they
follow the Savior and trust in his plan and it brings such peace to my heart and soul. Just like
any other mother, my greatest wish and desire is to know that my family is happy:) and true
happiness comes by following the Gospel Plan of Happiness.
I wish all mothers could feel the peace and joy that I feel today. I love my dear mother and
mother in law who are in heaven and was thinking about what gift to give them even though they
aren't on this earth any longer. Larry and I decided that we would show increased love to one
another this year and serve each other more...that is the gift that our mothers would want.
Happy Mother's Day! (My husband got me a darling little puppy! She's so cute!)
this afternoon.
It will be great to hear his voice and to feel of his spirit. Every year, I ask my kids and their
spouses to stand up and sing my favorite hymn to me and I'm looking forward to hearing them
sing it today. It's "I Know That My Redeemer Lives." They are all coming over for dinner today
(all that are in state) My children bring great joy to me as they
follow the Savior and trust in his plan and it brings such peace to my heart and soul. Just like
any other mother, my greatest wish and desire is to know that my family is happy:) and true
happiness comes by following the Gospel Plan of Happiness.
I wish all mothers could feel the peace and joy that I feel today. I love my dear mother and
mother in law who are in heaven and was thinking about what gift to give them even though they
aren't on this earth any longer. Larry and I decided that we would show increased love to one
another this year and serve each other more...that is the gift that our mothers would want.
Happy Mother's Day! (My husband got me a darling little puppy! She's so cute!)
Betty White Keenan SNL Scared Straight Skit Use Weightlifting Belts from Unique Fitness Concepts
Check out the hilarious Saturday Night Live Scared Straight skit with Keenan and Betty White. The weightlifting belt Keenan is wearing is extra large six inch tan leather sold to Saturday Night Live by Unique Fitness Concepts
Monday, May 3, 2010
The Proper Technique for Performing Dumbbell Lateral Raises
Here are the keys to the exercise:
1) Use a light to moderate weight. If the dumbbells are too heavy then you risk injury and compromise form.
2) Turn your hands to the outside as you lift the weight. This action will work the delts to a higher degree.
3) Do not use momentum of other muscles to move the weights. This would totally defeat the purpose of the exercise and minimize the necessary work of the shoulders.
4) The rest time between sets should be at a minimum at 30 - 45 seconds. The shoulders recover quickly and you can decrease the overall time it takes to achieve a burn and exhaustion for the exercise with decreased rest in between sets.
Saturday, May 1, 2010
23-Month-Old Succumbs to Niemann-Pick Disease Type A/B
Caileen Harley Harrison (NPA/B)
May 7, 2008 - April 19, 2010
We are very saddened to pass along word of the death of little Caileen Harley Harrison, just short of her second birthday, due to complications of Niemann-Pick Disease Type A/B. Caileen was the daughter of NNPDF member Valerie Montgomery and Collis Harrison of California.
Kelly Puente of the Long Beach California Press-Telegram filed a story earlier this week about Valerie and Caileen. Caileen brought her family great joy despite her struggle with Niemann-Pick Disease. Visit the NNPDF NewsLine for a link to the Press-Telegram story and more photos.
Our deepest sympathy goes out to all Caileen's family and friends in their loss.
[photo credit: Brittany Murray/Press-Telegram]
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