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NPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseases NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > TAKE ACTION > STATE COVERAGE STATE COVERAGE FOR PKU. Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make an CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE ARE The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU.NPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseases NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > TAKE ACTION > STATE COVERAGE STATE COVERAGE FOR PKU. Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make an CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > RESOURCES > SCHOOL INFORMATION An Educator’s Guide to PKU is for teachers to help support children with PKU at school. Developed in the Division of Metabolism and Genetics at Boston Children’s Hospital, with input from teachers, students, and parents, the guide includes helpful information about low-Phe nutrition, common learning challenges, and guidance for educators, resources to find additional information andWHAT IS PKU
0:00 / 5:20. Live. •. Phenylketonuria (known as PKU) is an inherited metabolic disease affecting the brain through increased levels of a substance called phenylalanine (Phe) in the blood. An amino acid, Phe is a building block of protein and is found in all proteins, most foods, and in some artificial sweeteners.VIRTUAL PKU SERIES
As part of our Virtual PKU Series, we are sharing this important overview on Gene Therapy, a potential treatment for PKU, provided by Homology Medicines, a generous conference sponsor. Enjoy this step by step recipe video with Chef Neil. Have fun making a delicious "apple tart" created for a low protein PKU diet. NPKUA > RESOURCES > FIND A CLINIC PKU Clinics. You can use the zoom and drag features of the map or Enter State or zipcode. NPKUA > RESEARCH > PKU PATIENT REGISTRY The PKU Patient Registry is a secure database that provides a way to collect information from many different people with PKU. The information can be entered into the secured database by completing several different online surveys that are filled out at your own paceone at a time.
NPKUA > RESOURCES > COOKING & FOOD On-Line FOOD LIST. How Much Phe is an online subscription service which provides access to Phe content in the Low Protein Food List for PKU and PKUNews.org's Baby Food List. It is a comprehensive diet-management system for PKU with phe/pro/exchange and calorie values for more than 7,000 foods.THE PKU CLINIC TEAM
16 Treatment and Diet Overview The Low-Protein Diet People with PKU get most of the protein they need from medical formula, the backboneof the PKU diet.
MY PKU BINDER
2 Provided by the National PKU Alliance www.npkua.org Acknowledgements With special thanks to: Applied Nutrition for the donation of materials from MY PKU Toolkit A Transition Guide ADHD, EXECUTIVE FUNCTIONS AND PKUWEB VIEW Inattention symptoms. DSM-IV SYMPTOMTypicalADHD. No attention to details 6.0 69.5Can’t sustain attention 10.3 77.0Doesn’t listen 7.6 68.3No follow-through 5.0 77.7Disorganized 3.3 76.0Avoids sustained tasks 7.3 62.7Loses things 13.9 79.2Easily distracted 14.5 86.1Forgetful 5.3 68.1 THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE ARE The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseasesNPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > TAKE ACTION > STATE COVERAGE STATE COVERAGE FOR PKU. Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make an CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE ARE The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseasesNPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > TAKE ACTION > STATE COVERAGE STATE COVERAGE FOR PKU. Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make an CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child.NPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > WHAT IS PKU > ABOUT PKU Live. •. Phenylketonuria (known as PKU) is an inherited metabolic disease affecting the brain through increased levels of a substance called phenylalanine (Phe) in the blood. An amino acid, Phe is a building block of protein and is found in all proteins, most foods, and in some artificial sweeteners. PKU infants in the United Statesare
NPKUA > WHAT IS PKU > A PKU GUIDE FOR NEW PARENTS Updated in 2020, A PKU Guide for New Parents is excerpted from My PKU Binder, a comprehensive resource to manage PKU from diagnosis to adulthood.. The guide will help new parents understand more about PKU, what to expect at different stages in life, and where to turn forsupport and help.
NPKUA > RESOURCES > SCHOOL INFORMATION An Educator’s Guide to PKU is for teachers to help support children with PKU at school. Developed in the Division of Metabolism and Genetics at Boston Children’s Hospital, with input from teachers, students, and parents, the guide includes helpful information about low-Phe nutrition, common learning challenges, and guidance for educators, resources to find additional information andWHAT IS PKU
0:00 / 5:20. Live. •. Phenylketonuria (known as PKU) is an inherited metabolic disease affecting the brain through increased levels of a substance called phenylalanine (Phe) in the blood. An amino acid, Phe is a building block of protein and is found in all proteins, most foods, and in some artificial sweeteners. NPKUA > WHAT IS PKU > PKU AND THE BRAIN Current medical evidence has led experts on PKU to suspect that current therapy for PKU may leave individuals with an increased risk for subtle deficits in brain function. To address this, a group of PKU experts published a 107-page supplement in 2010 on current topics surrounding this issue to raise awareness in the PKU scientificcommunity.
NPKUA > RESOURCES > FIND A CLINIC PKU Clinics. You can use the zoom and drag features of the map or Enter State or zipcode. NPKUA > RESEARCH > PKU PATIENT REGISTRY The PKU Patient Registry is a secure database that provides a way to collect information from many different people with PKU. The information can be entered into the secured database by completing several different online surveys that are filled out at your own paceone at a time.
NPKUA > NEWS & EVENTS > AWARENESS ACTIVITIES The NPKUA is committed to building national awareness. We encourage local organizations, volunteers, and families to come together to coordinate walks, runs, golf tournaments, picnics and camps to spread PKU awareness and raise funds for NPKUA programs such at advocacy, education, maternal PKU and research because these events benefit youMY PKU BINDER
2 Provided by the National PKU Alliance www.npkua.org Acknowledgements With special thanks to: Applied Nutrition for the donation of materials from MY PKU Toolkit A Transition Guide THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE ARE The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseasesNPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > TAKE ACTION > STATE COVERAGE STATE COVERAGE FOR PKU. Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make an CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE ARE The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseasesNPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > TAKE ACTION > STATE COVERAGE STATE COVERAGE FOR PKU. Coverage for PKU varies from state to state, although 39 states have passed legislation that requires at least some coverage of medical foods. Some states have passed legislation to mandate insurance coverage for PKU, while others provide medical foods directly to PKU patients through newborn screening or state health CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make an CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > WHAT IS PKU > A PKU GUIDE FOR NEW PARENTS Updated in 2020, A PKU Guide for New Parents is excerpted from My PKU Binder, a comprehensive resource to manage PKU from diagnosis to adulthood.. The guide will help new parents understand more about PKU, what to expect at different stages in life, and where to turn forsupport and help.
ADULT PKU PROGRAMS
The program provides meaningful opportunity to experience the joy and challenges of pregnancy and PKU with someone who truly understands. Please contact Katrina Swenson, Project and Communications Coordinator with any questions about the NPKUA's Adult Programs at katrina.swenson@npkua.org NPKUA > WHAT IS PKU > PKU AND THE BRAIN Current medical evidence has led experts on PKU to suspect that current therapy for PKU may leave individuals with an increased risk for subtle deficits in brain function. To address this, a group of PKU experts published a 107-page supplement in 2010 on current topics surrounding this issue to raise awareness in the PKU scientificcommunity.
NPKUA > RESOURCES > FIND A CLINIC PKU Clinics. You can use the zoom and drag features of the map or Enter State or zipcode. NPKUA > RESEARCH > PKU PATIENT REGISTRY The PKU Patient Registry is a secure database that provides a way to collect information from many different people with PKU. The information can be entered into the secured database by completing several different online surveys that are filled out at your own paceone at a time.
NPKUA > NEWS & EVENTS > AWARENESS ACTIVITIES The NPKUA is committed to building national awareness. We encourage local organizations, volunteers, and families to come together to coordinate walks, runs, golf tournaments, picnics and camps to spread PKU awareness and raise funds for NPKUA programs such at advocacy, education, maternal PKU and research because these events benefit you NPKUA > RESOURCES > COOKING & FOOD On-Line FOOD LIST. How Much Phe is an online subscription service which provides access to Phe content in the Low Protein Food List for PKU and PKUNews.org's Baby Food List. It is a comprehensive diet-management system for PKU with phe/pro/exchange and calorie values for more than 7,000 foods. CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels.MY PKU BINDER
2 Provided by the National PKU Alliance www.npkua.org Acknowledgements With special thanks to: Applied Nutrition for the donation of materials from MY PKU Toolkit A Transition Guide THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE AREFOODS TO AVOID WITH PKUFAMOUS PEOPLE WITH PKUWHAT IS PKU DISEASEHOW COMMON IS PKUSIGNS AND SYMPTOMS OF PKUSYMPTOMS OF PKU The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseasesNPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINESWHAT IS A PKUWHAT IS PKU DISEASEPKU MEDICAL ABB The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make anMY PKU BINDER
2 Provided by the National PKU Alliance www.npkua.org Acknowledgements With special thanks to: Applied Nutrition for the donation of materials from MY PKU Toolkit A Transition Guide CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCYPHENYLALANINE AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALSWHAT IS PKURESEARCHTAKE ACTIONRESOURCESNEWS & EVENTSWHO WE AREFOODS TO AVOID WITH PKUFAMOUS PEOPLE WITH PKUWHAT IS PKU DISEASEHOW COMMON IS PKUSIGNS AND SYMPTOMS OF PKUSYMPTOMS OF PKU The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are all connected to PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of people with PKU. NPKUA > RESOURCES > COVID-19 INFO Patient Resources. Through the new program, NORD will provide financial assistance to eligible patients, covering up to $1,000 annually. For more information on the NORD COVID-19 Critical Relief Program and to apply, please contact NORD by telephone at 203-242-0497, the website at rarediseases.org, or via email at COVID19assistance@rarediseasesNPKUA > RESOURCES
The NPKUA was created by people just like you -- parents, grandparents and adults whose lives are affected by PKU. This section has specific resources for adults and families living with PKU to better manage their disorder on a daily basis. NPKUA > NEWS & EVENTS > PKU CAMPS We have compiled a list of the 2021 PKU Summer camps that cater to PKU families and adults. Descriptions and contact information of the 2021 Summer Camps >>. All of these camps are also listed on our website calendar of events. Emory Metabolic Camp. June 23-26, 2021; Atlanta, GA. Camp Cavett. August 4-8, 2021; Adair, OK. Camp PHEver/Camp ForAll.
NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINESWHAT IS A PKUWHAT IS PKU DISEASEPKU MEDICAL ABB The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. CHAPTER 1: WHAT IS PKU? 10 What is PKU? 3 Acosta B, Yannicelli S, Marriage B, et al. Nutrient intake and growth of infants with phenylketonuria undergoing treatment. J Pediatr Gastroenterol Nutr 1998:27:287-91 4 Maltzman, S, : My PKU Toolkit A Transition Guide to Adult PKU Management. New Jersey : Applied Nutrition Corp. 2007:5 People with PKU cannot convert Phe to tyrosine because their livers do not make anMY PKU BINDER
2 Provided by the National PKU Alliance www.npkua.org Acknowledgements With special thanks to: Applied Nutrition for the donation of materials from MY PKU Toolkit A Transition Guide CHAPTER 3: MONITORING BLOOD PHENYLALANINE LEVELS 26 Blood Phenylalanine Levels Monitoring blood Phe levels is an important part of managing PKU. PKU and the effects of treatment are evaluated by monitoring blood Phe levels. CHAPTER 9: PKU AND PREGNANCYPHENYLALANINE AND PREGNANCY 78 PKU and Pregnancy If you become pregnant unexpectedly, contact your clinic team immediately. The PKU team can help you reduce your Phe levels which will improve the outcomes for your child. NPKUA > WHAT IS PKU > PKU MEDICAL GUIDELINES The guidelines refer to PKU as phenylalanine hydroxylase (PHA) deficiency. The treatment of PKU is lifelong with a goal of maintaining blood PHE levels in the range of 120-360 umol/l (2-6 mg/dl) in patients of all ages for life. Patients treated within the early weeks of life with initial good metabolic control, but who losethat control in
NPKUA > WHAT IS PKU > MY PKU BINDER My PKU Binder is a comprehensive manual on effectively managing PKU on a daily basis. These materials offer hundreds of tips, advice and what to do from birth to adulthood both practically and emotionally. My PKU Binder will help you understand more about PKU, what to expect at different stages in life, and where to turn for support and help. NPKUA > WHAT IS PKU > A PKU GUIDE FOR NEW PARENTS Updated in 2020, A PKU Guide for New Parents is excerpted from My PKU Binder, a comprehensive resource to manage PKU from diagnosis to adulthood.. The guide will help new parents understand more about PKU, what to expect at different stages in life, and where to turn forsupport and help.
MY PKU BINDER
2 Provided by the National PKU Alliance www.npkua.org Acknowledgements With special thanks to: Applied Nutrition for the donation of materials from MY PKU Toolkit A Transition GuideADULT PKU PROGRAMS
PATHWAYS provides one-on-one virtual support to both adults and families that don’t know where to turn to find the resources they need to manage PKU.For example, trained volunteers can provide executive function skills, care coordination and resources that can help with things such as insurance reimbursement support, patient assistance programs and connect you with a local organization or a DR. BICKEL & DR. GUTHRIE'S BIRTHDAYS > NPKUA > NEWS Today is the birthdays of Dr. Horst Bickel & Dr. Robert Guthrie. International PKU Day is the anniversary of two innovators and “founding fathers” in the diagnosis and management of PKU.VIRTUAL PKU SERIES
As part of our Virtual PKU Series, we are sharing this important overview on Gene Therapy, a potential treatment for PKU, provided by Homology Medicines, a generous conference sponsor. Enjoy this step by step recipe video with Chef Neil. Have fun making a delicious "apple tart" created for a low protein PKU diet. NPKUA > RESOURCES > FIND A CLINIC PKU Clinics. You can use the zoom and drag features of the map or Enter State or zipcode. INTERNATIONAL PKU AWARENESS DAY > NPKUA > NEWS & EVENTS Happy International PKU Awareness Day! Have an event to add to our Calender? submit an event >> ADHD, EXECUTIVE FUNCTIONS AND PKUWEB VIEW Inattention symptoms. DSM-IV SYMPTOMTypicalADHD. No attention to details 6.0 69.5Can’t sustain attention 10.3 77.0Doesn’t listen 7.6 68.3No follow-through 5.0 77.7Disorganized 3.3 76.0Avoids sustained tasks 7.3 62.7Loses things 13.9 79.2Easily distracted 14.5 86.1Forgetful 5.3 68.1Donate
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THE NPKUA'S MISSION IS TO IMPROVE THE LIVES OF INDIVIDUALS WITH PKUAND PURSUE A CURE.
The National PKU Alliance (NPKUA) is a vital voice for the PKU community. We work towards expanding PKU research and accelerating the timeline for a cure by investing in peer-reviewed and targeted research. We provide education and support to people living with PKU. We are the national voice for advocacy at the federal level - at the NIH, FDA and in the halls of Congress. THE NPKUA WAS FORMED IN 2008 BY PARENTS, GRANDPARENTS, AND INDIVIDUALS ACROSS THE COUNTRY JUST LIKE YOU. WE ARE ALL CONNECTED TO PKU. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and industry to make a difference in the lives of peoplewith PKU.
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The PKU Patient Registry is a secure database that provides a way to collect information from many different people with PKU. The information can be entered into the database by completing several different online surveys that are filled out at your own pace one at atime.
These surveys are intended to gather information about many different aspects of PKU including details about diagnosis, diet, medication, developmental milestones, behavior, and other clinical symptoms. The information that is entered will remain private and will not be linked to your name or any other identifiers. You will have the ability to view what you have entered and update your information regularly.LEARN MORE
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A PKU GUIDE FOR NEW PARENTS A guide to help new parents understand more about PKU, what to expect at different stages in life, and where to turn for support and help.Request Guide
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With lots of information circulating over the Internet about COVID-19 and PKU, you can trust information provided by the NPKUA.Learn More
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* What is PKU
* About PKU
* Recent Diagnosis
* PKU Medical Guidelines * A PKU Guide For New Parents* My PKU Binder
* PKU and the Brain
* More Choices
* Research
* PKU Patient Registry * Clinical Trial Locator * NPKUA Funded Research * Scientific Advisory Board * Scientific Grant Requests* Take Action
* Medical Nutrition Equity Act* Lobby With Us
* State Coverage
* Your Legislators
* Resources
* Find a Clinic
* Adult Programs
* Return to Treatment * Educational Videos * Insurance Coverage * School Information* Cooking & Food
* COVID-19 Info
* News & Events
* Fundraise For PKU
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* Virtual PKU Series* PKU Camps
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