Cystic fibrosis pen-pal club and support group

01/30/2025

Good afternoon everyone ... I hope that everyone is staying as healthy as possible and if your in club med I hope that you are going home very soon... I have been sick for the month of January and I am hoping to return to work on the 9th of feb as long as the x ray comes back ok ... I would like to try a food shelf program for us . I get calls all the time from families asking if we know were we can go to get help with food due to the food costs increasing we need to come up with away to help these families ... I have to tell you that I have been in this way as well and its very hard to know what to do when you have no money until the following week .. When I was young are state use to give a increase of food. stamps for cystic fibrosis patients and they do not do that anymore so upsetting we need to work on getting this back and the only way that will happen is to contact every law maker on both sides CF needs some help I know many families will agree.. I remember when cf clinic s use to give a gift card s but I have not seen that as well for some time .. Lets get this going your brother always David cfkid wagner

Call now to connect with business.

08/28/2024

Have you ever been to the ssi office in Minneapolis mn the one on Chicago ave south .. I would like to take a survey on how people think they get treated there by the security team that is watching the front door Yesterday I went there and it was the worst they need to learn there Job and show respect to people I saw them make a lady whom just moved to MN cry because how they treated her and her young son she told me what happen and I thought that was the most saddest thing ever they do not know any matters they act like they are ssi staff and they are not they yell at people whn they do not understand what is going on and now your forced to go down there if you need a new ssi card I found away to get a card but it was online but a online fee of $40 but I got mine for free the lines are very long please I want to hear your thoughts on how you have been treated at these ssi offices in MN and other states throughout America thanks for your time David cfkid wagner

04/09/2024

Att everyone please note that my address is now the following
[email protected]

02/16/2024

Dear law makers of mn,

Today I would like to take a moment and speak with you about some very urgent issues that are happening ... The state of mn medical program offerers a ride to the medical meeting s with Drs and that is wonderful however here is were the problem comes in... Currently all people that use the ride program must know 2 to 3 days ahead in order to get to the Dr meetings now we all know as humans we sometimes get sick and we do not know that far in advance . We also have at times have Dr s or nurses that will call these same patients and ask them to come in that same day or the next day and when you call the ride program they will tell you no well in my eyes and many other s that I have spoken with agree if a Dr is asking for you to come to see them for testing or what ever there is a good reason why they want to see you right away and calling 911 for this is not a good option because these are not emergency rides they are urgent rides instead the other sad deal is that metro mobility also does this same thing and so are people using these services can not go anywhere unless they have 2 days planned ahead of time in order to get care now before covid 19 the metro mobility did have same day rides and they also had next day rides now those are gone we need to correct this issue right away like I have stated above that everyone needs medical meetings with Drs and nurses and sometimes even a ride to the pharmacy if we need to get a law that say s that all those on these programs must be able to get a ride during the same day or at least the next day but waiting two days makes it very hard on everyone ... Metro mobility is also used to take people other places then just Dr meetings and no one wants to be stuck in the home because they can not find a ride I know that mn can do better then what they are doing now maybe we need to get another vendor to help but leaving a person behind makes things very hard for everyone. I know that people have been left behind from both of these programs now let me explain if you take a ride to the store and you do your shopping you get 3 hrs and then they come back and get you however there has been times when they never show up now if we do that we get counted as a no call no show and if you get too many of them they will kick you off the programs I say that it needs to be a rule that say s if they don't show up then they get in trouble just like we do instead of them doing nothing my one client got stuck for hrs at a place many miles away from his home and so he had to call someone from another city and tell them to come and get them that time the provider did not pick the client up or get in trouble for this issue .. There is also not many cabs in the state of mn that are for people in wheelchairs and other devices they used to have many more but now they have went away even if a company of a taxi service had them on a on call so that if a person needed them they would have at least a chance to get home all I am saying is not everyone has someone that they can call to get that help and if they do it could be a very long wait for them changes in the ride programs need to change insurance pays for the medical rides but why does it have to be this bad can some law maker please come out with some new laws that will fix these issues and if any of them would like to speak with me about this I would speak out with many other s you can reach me anytime 763 280 2137 thanks so much for your understanding and support. your mn resident David cfkid Wagner

07/27/2022

*BREAKING NEWS *
*PLEASE READ*

Good morning
everybody this is David Wagner calling everybody today I hope you all are having a great summer I have some wonderful breaking news today we just found out that we are going to have virtual Court on August 22nd on a Monday to finish up my name change to David CF kid Wagner this is am so very important and very excited and I hope that you all will join me on this historic day August 22nd this day will mean so much to many cystic fibrosis patients around the world it is time for us to shine it is time for us to be acknowledged and not be placed off the back burner please remember that this is not a done deal yet but is very very close of completion and I think each of you for your blessings your thoughts and your prayers as we go through this great big name change thank you very much for your time remember please leave nice comments below other comments will be deleted thank you so much may God be with each of us and let's have a great summer be safe out there thank you your brother always David Wagner

08/26/2021

If y are having a hard time deciding on to send your cf students to school please reach out to me on the hot line 763 280 2137

08/15/2021

Look everyone are group was on the score board at the mn twins game

07/04/2021

Looking for volunteers to help pass David's law for children and young adults with cystic fibrosis in American schools the flower that will help them be able to take them signs at their own school without supervision of an adult this is an anion harmful medication and would not hurt anyone is very important when we have a lot of parents that are struggling on not being able to work because they have to go to the school each and every day together I'm saying we are needing people to write letters to lawmakers and two other elected officials to get this law passed it is passed in several States already and we are working on a photo passage now thank you
Phone 763 280 2137

02/25/2019

Good early morning every one. I hope that each of you had a great weekend . As you all know that we are still working on David’s law . So many of you know that we have a event coming up for March 12 th 2019 called nation call to Dc . Last year this call got 2,000 calls to the White House and 3 calls to us from lawmakers that heard about the call. The call lasts 2 days the phone to the White House is about David’s law and how if passage would happen how good this would be for the students and the families here Is the list

1 billing decreases towards these families during the remaining of the school year.This means that they had a better school day

2 less students were discharged from school and missed less class time for students that skipped lunch all together because they did not want to go to a nurse s office for tummy pain and wanting to go home right away

3 there were less students that were not wanting to hide there enzymes on there person so that they could go straight to the lunch office instead of going to the nurses office this is because the schools would not allow a student to bring enzymes in to the nurses office before school started so it would mean that the parent would have to drop them off right before classes started but if the parent has another student with CF in another school they would have to do one at a time this means each one would be late to the first class once per month no matter what bottle ran out first getting a Tarty would lower there grade in some schools this was a very bad news if a student has cf got
Caught taking there enzymes in the restroom the staff person that would catch the student and would take them to the office and then they were kicked out of school for 3 days and if they were kicked out more then once like this they would become suspended for 2 weeks all because they were trying to stay of trouble because the other parent had to be at work on time or they would get fired so many times only one the parent that would be able to be on call for the schools this would mean also mean that one parent was parent would take care of all meds during a school day and the other parent would nog work out of the home and was on stand by for the schools were they would go this also would mean that if the first child with CF was sick then the other one would be pulled out of school as well because they were not able to be on all for the school because the other student has to stay home and because of his age they were not able to leave school at meal time to do enzymes so the other student would have to take a sick day until the student with cf can return back to school and that won’t happen until the last day of meds that were ordered by the dr so this would also mean that if one was sick the other one was out two and a lower grade was given but this was so unfair but that’s how the schools did this in many of the state s and many of the schools do this as is well as I know of one student that begged his to go to school the next day so the patent placed enzymes in a zippy look bag and tied to his boxers and when stood up to the urinal he was cought and the teacher did not know that he had cf so he wrote him up for padding drugs however as soon as the school principal saw the school records the principal whom was subbing removed him from school for 2
Months but then when the nurse that was the Normal nurse turned up this was all changed and was able to return back to school after are group Made a phone call to the school with the parent on line we came together and we then were told that he was able to return to school upcoming Monday we wrote a email to all school staff a letter to all staff telling them about the student whom was fighting CF so this will never happen again and so far so good no Complaints so far this school year

4 a increase of home school due to CF and schools not understanding CF it made 3 students this 2 Nd half of school change there in school status to home school status very sad now they have lost friends and they have lost after school activities because they have a rule that states home school students can not perpetuate in foot ball socker and swimming and even cooking class and the senior school dance it was a very upsetting and the schools I have contracted will not w with me on getting this fixed

5 decreasing able to call home for a cf student that needs a inhaler and the cost that is $500 and the parent s can not get the cost of rxtra one see the pharmacy would only bill one per order then this means. That the parent would have to go to pharmacy first then rush to the school with the inhaler so glad that the student had not yet had a emergency were they must have that back up right then see the school s will only allow what inhaler are currently using

I am sure that the callers can come up with the remaining for this call to Dc. Here is the number

PHONE NUMBERS
Comments: 202-456-1111
Switchboard: 202-456-1414
M

Yeppers. me I found the post office information as we’ll
At
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Your brother to each of and sister fighting CF I am here for you 24 hrs a day 612-282-1211 let are voice es be heard stat hh

12/25/2018

I would like to wish all my brothers and sisters a very merry Christmas and happy holidays I also want to wish well wishes of those that are fighting cf in the hospital and won’t be home this year I have done that many yrs in the past so I know how you feel I hope that you get to return home very soon please note that the Cystic fibrosis hotline will remain open during the holidays season same hrs 24 hrs a day 7 days a week may god be with each of you and you all in my eyes are my brother and my sisters and you all mean the world to me With love to all

David Wagner