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CF Patients Improve Lung Function with Elexacaftor Combo, Data Show

Jan 02, 2030 04:44 am | Cystic Fibrosis News Moderator

Replies: 0

Adding elexacaftor to tezacaftor and ivacaftor leads to marked improvements in lung function and quality of life in people with cystic fibrosis, data show. Read more about it here.
What do you think of this news?

Phase 2b Trial of MS1819 Will Be Conducted at TDN Clinical Sites

May 12, 2020 06:35 am | Cystic Fibrosis News Moderator

Replies: 0
AzurRx BioPharma has been cleared to conduct its Phase 2b OPTION 2 trial evaluating MS1819 at Therapeutics Development Network (TDN) clinical sites. Read the rest of the story here.
What do you think of this news?

Motivation Monday: Setting Personal Goals

May 11, 2020 12:00 am | Kevin Schaefer

Replies: 0
Hey everyone! Hope you all had a safe and relaxing weekend.
Today, I wanted to start a conversation about setting personal goals. Obviously, it’s an unusual time to even think about this subject. Between the COVID-19 pandemic and just trying to stay healthy, most of us aren’t focused on the future.
Still, I actually think it’s a great time to stay motivated and develop goals. While we’re all stuck at home, we can utilize this time for personal growth, and to invest in our relationships. You can also have goals related to your physical health. I know it sounds corny, but I think this time in isolation provides us with opportunities.
Check out this article on tips for setting goals. I like how the writer breaks down the different types of goals, and explains the benefits of setting them. They can really help increase our motivation, both at work and in our daily lives.
What are some goals you have for yourself? What do you use as a primary source of motivation?

David “s Law for public schools in America :)

May 10, 2020 11:39 am | David Wagner

Replies: 0
good mothers day to all mothers out there u all have worked so hard to keep all of us cystic fibrosis warriors safe and as healthy as possible through out are lives so from one brother to another I say thanks so much this means the world to me and more then you will ever know you all moms have been chosen by god to keep us safe and healthy as possible and i know that each of you have done the best that you can and you are all great cooks as well ..
I would like to take a moment to explan how David s law will work in america and possible other countries as well this law is a enzyme law for students with cystic fibrosis this law will allow all students to be able to self give there own enzyems during every meal after school actvites as well including field trips as well currently David s law is working this way in some schools and states already and here is how it goes
1 A letter from the Cystic fibrosis Dr stating that he is ok with the cf student named above to be able to self give enzymes with out issues and has done this at home with out issues as well
2 A letter from mom or dad stating the same that they agree to the Dr s letter and they recomond that there cf student be able to self adminster right away as well and has done this for many years at home with out issues and knows what happens if they do not take them before each meal including milk and other fatty food s and we feel safe that they are able to be carring during field trips and during each school day as well
3 A letter from the school nurse stating that this is in the best interst of the cf student to be able to self adminster there own enzymes with out issues and they agree that they will have 2 bottles for that school day
4 2 bottles of enzymes will be issued to the cf student from the local pharmacy that say the fowlling one bottle will say during school day and another will say after school actvities and field trips each bottle will have about 50 enzyems in each bottle bottle one will be on them in a pocket or in a school book bag but must remain on the cf students person at all times so that they are able to take them at a moments notice for example if they go to a class room and they are doing a birthday party or other fun stuff were they are going to be having food or fatty drinks the 2 bottle will have 50 as well unless the field trip is for over night then the 2nd bottle will have 150 in the bottle this is to insure that the cf student has enoguh during that over night field trip for school this happens about 2 times per year in many school systems the bottles will be dumped out by a parent and recounted each day to the amount s that each bottle is needing for the upcoming day this must be done on a daily night
5 cystic fibrosis support group will be ready to respond 24 hr s a day for ? s that a student may have or a parent or a teacher or school staff this is also so that we can help a teacher understand cf in the best way possible this number is 612-282-1211 this line gets many calls per year and sometimes u may have to leave a voice mail but they are answered very fast through out the school day
this law is being used so that a parent or person in charge of the cf student currently what is happening is the school is requring someone from the home to come to the school on a moments notice to give enzymes becuse there is no school nurse and no staff is willing to give enzymes so this means that this person must be ready to respond by a phone or other means of letting the parent know that they need them to come they come 15 min before lunch time and this means that the studnent misses that class time in order to meet the person coming from home to give enzymes some schools requre this to be done in the parking lot or in the office so it takes time for the student to get there in order to get to the lunch room before they lose the meal time we all know that students do not get the time that they need and this is a issue for all schools and students not only cf students we ask that the school allows the child to move in line were there class is so that they have full time in order to eat and many of the schools say no problem and this is great the sad part of this the person from home can not have a job because they have to respond to all enzyme request s plus they must go on all field trips or the cf student will have to stay home and they will get a 0 for for the day and no credit will be allowed to be made up so this is why its just better for them to go this means most of the time there is only one income coming in to the home and this means they may not be able to get what the cf student needs on a daily basis this law would allow that person to be able to work during the school day like most parents already do
5 the schools that use David s law have had no issues with the law and they are using this with out issue and this has shown that the student with cf is able to take care of them selves with out issue and no what will happen if they do not take care of there meds
6 we have added inhallers for cystic fibrosis students and also asthma inhallers this would be added to David s law this measns that they would follow the same directions and be able to self carry there own inhallers there was a death of a child with asthma that could not get to his inhaller in time and because of this the child with asthma passed away and we have added this to Davids law beacucase of a requset of someone that knew the family please help us get David s law passed as soon as possible share this with everyone possible including media and head of school s in your schools area as well this would mean that the child with asthma or cysitc fibrosis would be safe and that is wonderful news and this way no one would be able to say that the students will not be able to have the meds ready for them on a moments notice we had a issue last school year with a boy whom took his enzyems while he was using the restroom at the urinal and when a teacher came in they saw him taking something and did not know that the boy had cystic fibrosis the mom was supposed to come but because she had another Dr s appt with a brother of cysitc fibrosis and so she could not go to the school to give enzymes he was kicked out of school and i had to step in and get a emergency IEP started and we promised that would never happen again and we agreed in writting and so the school agreed that he can come back to school and this also ment that he could come back to schoool the next day this is very upsetting that this happen please if u can help me in any way to make this law happen throughout america please call 612-282-1211 god bless each of us as we are all cf warriors each and every day and soon CF will stand for cure found and not cystic fibrosis
with love and brotherhood to all
David Wagner CNA/HHA N0CFP