For CF R.I.S.E. Portal



CF Milestones


CF R.I.S.E. has developed a timeline for recommended CF-related milestones a person with CF and his or her parent or support person can work toward as the child grows up.



CF Milestones


CF R.I.S.E. has developed a timeline for recommended CF-related milestones a person with CF and his or her parent or support person can work toward as the child grows up.




CF Milestones at a Glance


View a variety of goals on the CF journey designed for specific age groups to achieve.


DOWNLOAD CF MILESTONES AT A GLANCE PDF   



EN ESPAÑOL   



Parent/Support Person Completely Responsible

Parent/Support Person Primarily Responsible

Shared Responsibility

Person with CF Primarily Responsible

Person with CF Completely Responsible

Early School, Ages 6-9

Understanding CF

Understands the basics of CF: what it is, how it impacts the body, etc.

Understands the importance of sleep on overall health

Understands the importance of sports, exercise, salt intake, and healthy activities

Understands importance of infection control and ways to manage the spread of germs/infection

Understands the roles and responsibilities of CF care team members

Understands the key symptoms that might trigger exacerbations or a decline in health

Knows names of medications, understands what they do, and learns about new treatments as they are introduced

Understands BMI percentile, FEV1 scores, key aspects of CF screening, and basic tests

Understands the proper nutrition and diet plan for a person with CF and impact on lung/overall health

Understands how equipment works and how to get replacement equipment

Understands rights in school and the workplace

Understands other possible health issues linked to CF (CF-related diabetes, liver disease, sinus issues, etc.)

Understands impact of CF on body/sexual development

Understands the impact of CF on mental health (anxiety/depression)

Understands how lifestyle choices impact long-term health (drinking, drugs, smoking, transplant, relationships)

Understands CF-related insurance, patient assistance programs, medication, and financial management

Managing CF Care

Leads all aspects of clinic visit—asks/answers questions about health status, treatment changes, insurance, etc.

Proactively identifies and reports changes in health/symptoms and alerts parent or care team

Keeps track of FEV1 and BMI and implements recommended nutrition/treatment changes, as needed

Monitors and maintains appropriate sleep schedule

Creates and maintains proper diet and nutrition plan

Prepares for hospital visits (packing, alerting school/work, etc.)

Coordinates care with healthcare providers outside the CF center (primary care, psychologist, OB/GYN)

Person with CF is open to and ready for transfer to adult center

Schedules appointments and tracks all doctor’s appointments/clinic visits

Manages all insurance and financial aspects of CF care (ordering new treatments, coordinating refills, co-pays, etc.)

Arranges transportation to all doctor’s appointments/clinic visits

Taking CF Treatments & THerapies

Sets up all equipment and treatments


Remembers to take and carry pills and enzymes

Remembers and takes medicines and treatments as prescribed by doctor

Cleans and disinfects equipment


Sorts and tracks medications, identifies need for refills, and informs care team/pharmacy if running low

Stores medication properly


Has a plan or system for taking medicines and treatments when on the road (on vacation, at school, at work)

Living with cf

Pictures and openly talks about a future for the person with CF

Able to identify warning signs and apply strategies for managing anxiety and depression

Maintains and monitors exercise plan


Educates school, family, friends, and coaches about CF

Able to speak up/advocate for the person with CF in the medical system, school, or other social settings

Makes healthy lifestyle choices (drinking, drugs, infection control, etc.)

Understands the importance of—and utilizes—a support system of peers with CF

Download additional detailed milestones for 6-9 yr. olds

EN ESPAÑOL


Late Elementary & Middle School, Ages 10-12

Understanding CF

Understands the basics of CF: what it is, how it impacts the body, etc.

Understands the importance of sleep on overall health

Understands the importance of sports, exercise, salt intake, and healthy activities

Understands importance of infection control and ways to manage the spread of germs/infection

Understands the roles and responsibilities of CF care team members

Understands the key symptoms that might trigger exacerbations or a decline in health

Knows names of medications, understands what they do, and learns about new treatments as they are introduced

Understands BMI percentile, FEV1 scores, key aspects of CF screening, and basic tests

Understands the proper nutrition and diet plan for a person with CF and impact on lung/overall health

Understands how equipment works and how to get replacement equipment

Understands rights in school and the workplace

Understands other possible health issues linked to CF (CF-related diabetes, liver disease, sinus issues, etc.)

Understands impact of CF on body/sexual development

Understands the impact of CF on mental health (anxiety/depression)

Understands how lifestyle choices impact long-term health (drinking, drugs, smoking, transplant, relationships)

Understands CF-related insurance, patient assistance programs, medication, and financial management

Managing CF Care

Leads all aspects of clinic visit—asks/answers questions about health status, treatment changes, insurance, etc.

Proactively identifies and reports changes in health/symptoms and alerts parent or care team

Keeps track of FEV1 and BMI and implements recommended nutrition/treatment changes, as needed

Monitors and maintains appropriate sleep schedule

Creates and maintains proper diet and nutrition plan

Prepares for hospital visits (packing, alerting school/work, etc.)

Coordinates care with healthcare providers outside the CF center (primary care, psychologist, OB/GYN)

Person with CF is open to and ready for transfer to adult center

Schedules appointments and tracks all doctor’s appointments/clinic visits

Manages all insurance and financial aspects of CF care (ordering new treatments, coordinating refills, co-pays, etc.)

Arranges transportation to all doctor’s appointments/clinic visits

Taking CF Treatments & THerapies

Sets up all equipment and treatments


Remembers to take and carry pills and enzymes

Remembers and takes medicines and treatments as prescribed by doctor

Cleans and disinfects equipment


Sorts and tracks medications, identifies need for refills, and informs care team/pharmacy if running low

Stores medication properly


Has a plan or system for taking medicines and treatments when on the road (on vacation, at school, at work)

Living with cf

Pictures and openly talks about a future for the person with CF

Able to identify warning signs and apply strategies for managing anxiety and depression

Maintains and monitors exercise plan


Educates school, family, friends, and coaches about CF

Able to speak up/advocate for the person with CF in the medical system, school, or other social settings

Makes healthy lifestyle choices (drinking, drugs, infection control, etc.)

Understands the importance of—and utilizes—a support system of peers with CF

Download additional detailed milestones for 10-12 yr. olds

EN ESPAÑOL


Early High School, Ages 13-15

Understanding CF

Understands the basics of CF: what it is, how it impacts the body, etc.

Understands the importance of sleep on overall health

Understands the importance of sports, exercise, salt intake, and healthy activities

Understands importance of infection control and ways to manage the spread of germs/infection

Understands the roles and responsibilities of CF care team members

Understands the key symptoms that might trigger exacerbations or a decline in health

Knows names of medications, understands what they do, and learns about new treatments as they are introduced

Understands BMI percentile, FEV1 scores, key aspects of CF screening, and basic tests

Understands the proper nutrition and diet plan for a person with CF and impact on lung/overall health

Understands how equipment works and how to get replacement equipment

Understands rights in school and the workplace

Understands other possible health issues linked to CF (CF-related diabetes, liver disease, sinus issues, etc.)

Understands impact of CF on body/sexual development

Understands the impact of CF on mental health (anxiety/depression)

Understands how lifestyle choices impact long-term health (drinking, drugs, smoking, transplant, relationships)

Understands CF-related insurance, patient assistance programs, medication, and financial management

Managing CF Care

Leads all aspects of clinic visit—asks/answers questions about health status, treatment changes, insurance, etc.

Proactively identifies and reports changes in health/symptoms and alerts parent or care team

Keeps track of FEV1 and BMI and implements recommended nutrition/treatment changes, as needed

Monitors and maintains appropriate sleep schedule

Creates and maintains proper diet and nutrition plan

Prepares for hospital visits (packing, alerting school/work, etc.)

Coordinates care with healthcare providers outside the CF center (primary care, psychologist, OB/GYN)

Person with CF is open to and ready for transfer to adult center

Schedules appointments and tracks all doctor’s appointments/clinic visits

Manages all insurance and financial aspects of CF care (ordering new treatments, coordinating refills, co-pays, etc.)

Arranges transportation to all doctor’s appointments/clinic visits

Taking CF Treatments & THerapies

Sets up all equipment and treatments


Remembers to take and carry pills and enzymes

Remembers and takes medicines and treatments as prescribed by doctor

Cleans and disinfects equipment


Sorts and tracks medications, identifies need for refills, and informs care team/pharmacy if running low

Stores medication properly


Has a plan or system for taking medicines and treatments when on the road (on vacation, at school, at work)

Living with cf

Pictures and openly talks about a future for the person with CF

Able to identify warning signs and apply strategies for managing anxiety and depression

Maintains and monitors exercise plan


Educates school, family, friends, and coaches about CF

Able to speak up/advocate for the person with CF in the medical system, school, or other social settings

Makes healthy lifestyle choices (drinking, drugs, infection control, etc.)

Understands the importance of—and utilizes—a support system of peers with CF

Download additional detailed milestones for 13-15 yr. olds

EN ESPAÑOL


Late High School, Ages 16-18

Understanding CF

Understands the basics of CF: what it is, how it impacts the body, etc.

Understands the importance of sleep on overall health

Understands the importance of sports, exercise, salt intake, and healthy activities

Understands importance of infection control and ways to manage the spread of germs/infection

Understands the roles and responsibilities of CF care team members

Understands the key symptoms that might trigger exacerbations or a decline in health

Knows names of medications, understands what they do, and learns about new treatments as they are introduced

Understands BMI percentile, FEV1 scores, key aspects of CF screening, and basic tests

Understands the proper nutrition and diet plan for a person with CF and impact on lung/overall health

Understands how equipment works and how to get replacement equipment

Understands rights in school and the workplace

Understands other possible health issues linked to CF (CF-related diabetes, liver disease, sinus issues, etc.)

Understands impact of CF on body/sexual development

Understands the impact of CF on mental health (anxiety/depression)

Understands how lifestyle choices impact long-term health (drinking, drugs, smoking, transplant, relationships)

Understands CF-related insurance, patient assistance programs, medication, and financial management

Managing CF Care

Leads all aspects of clinic visit—asks/answers questions about health status, treatment changes, insurance, etc.

Proactively identifies and reports changes in health/symptoms and alerts parent or care team

Keeps track of FEV1 and BMI and implements recommended nutrition/treatment changes, as needed

Monitors and maintains appropriate sleep schedule

Creates and maintains proper diet and nutrition plan

Prepares for hospital visits (packing, alerting school/work, etc.)

Coordinates care with healthcare providers outside the CF center (primary care, psychologist, OB/GYN)

Person with CF is open to and ready for transfer to adult center

Schedules appointments and tracks all doctor’s appointments/clinic visits

Manages all insurance and financial aspects of CF care (ordering new treatments, coordinating refills, co-pays, etc.)

Arranges transportation to all doctor’s appointments/clinic visits

Taking CF Treatments & THerapies

Sets up all equipment and treatments


Remembers to take and carry pills and enzymes

Remembers and takes medicines and treatments as prescribed by doctor

Cleans and disinfects equipment


Sorts and tracks medications, identifies need for refills, and informs care team/pharmacy if running low

Stores medication properly


Has a plan or system for taking medicines and treatments when on the road (on vacation, at school, at work)

Living with cf

Pictures and openly talks about a future for the person with CF

Able to identify warning signs and apply strategies for managing anxiety and depression

Maintains and monitors exercise plan


Educates school, family, friends, and coaches about CF

Able to speak up/advocate for the person with CF in the medical system, school, or other social settings

Makes healthy lifestyle choices (drinking, drugs, infection control, etc.)

Understands the importance of—and utilizes—a support system of peers with CF

Download additional detailed milestones for 16-18 yr. olds

EN ESPAÑOL


Early Adulthood, Ages 18-25

Understanding CF

Understands the basics of CF: what it is, how it impacts the body, etc.

Understands the importance of sleep on overall health

Understands the importance of sports, exercise, salt intake, and healthy activities

Understands importance of infection control and ways to manage the spread of germs/infection

Understands the roles and responsibilities of CF care team members

Understands the key symptoms that might trigger exacerbations or a decline in health

Knows names of medications, understands what they do, and learns about new treatments as they are introduced

Understands BMI percentile, FEV1 scores, key aspects of CF screening, and basic tests

Understands the proper nutrition and diet plan for a person with CF and impact on lung/overall health

Understands how equipment works and how to get replacement equipment

Understands rights in school and the workplace

Understands other possible health issues linked to CF (CF-related diabetes, liver disease, sinus issues, etc.)

Understands impact of CF on body/sexual development

Understands the impact of CF on mental health (anxiety/depression)

Understands how lifestyle choices impact long-term health (drinking, drugs, smoking, transplant, relationships)

Understands CF-related insurance, patient assistance programs, medication, and financial management

Managing CF Care

Leads all aspects of clinic visit—asks/answers questions about health status, treatment changes, insurance, etc.

Proactively identifies and reports changes in health/symptoms and alerts parent or care team

Keeps track of FEV1 and BMI and implements recommended nutrition/treatment changes, as needed

Monitors and maintains appropriate sleep schedule

Creates and maintains proper diet and nutrition plan

Prepares for hospital visits (packing, alerting school/work, etc.)

Coordinates care with healthcare providers outside the CF center (primary care, psychologist, OB/GYN)

Person with CF is open to and ready for transfer to adult center

Schedules appointments and tracks all doctor’s appointments/clinic visits

Manages all insurance and financial aspects of CF care (ordering new treatments, coordinating refills, co-pays, etc.)

Arranges transportation to all doctor’s appointments/clinic visits

Taking CF Treatments & THerapies

Sets up all equipment and treatments


Remembers to take and carry pills and enzymes

Remembers and takes medicines and treatments as prescribed by doctor

Cleans and disinfects equipment


Sorts and tracks medications, identifies need for refills, and informs care team/pharmacy if running low

Stores medication properly


Has a plan or system for taking medicines and treatments when on the road (on vacation, at school, at work)

Living with cf

Pictures and openly talks about a future for the person with CF

Able to identify warning signs and apply strategies for managing anxiety and depression

Maintains and monitors exercise plan


Educates school, family, friends, and coaches about CF

Able to speak up/advocate for the person with CF in the medical system, school, or other social settings

Makes healthy lifestyle choices (drinking, drugs, infection control, etc.)

Understands the importance of—and utilizes—a support system of peers with CF

Download additional detailed milestones for 18-25 yr. olds

EN ESPAÑOL




Tools & Resources


People living with CF can come together with their parents and care teams to take advantage of a toolset that checks their knowledge and learning.