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In the last few months I have been so blessed to meet so many new “friends” that have CF. I have come to the conclusion that there are two types of CFers out there. The first group are the patients that really have a negative outlook on their disease and use their disease as a crutch, as an excuse. These are the people who look for sympathy because of their CF. I find that these people are often sick. I believe this could be because of their outlook on their disease. I know that some people’s health is worse that others, but I have met some really sick people whose attitude was far from negative and even on their death bed were grateful and full of positive. I believe that if you wake up every morning and tell yourself how sick you are and concentrate on that fact alone, you will be sick. But if you welcome everyday with a smile and look for the thankfulness in everything you do have… it makes the long journey a little easier… Please don’t get me wrong, I know we all feel this way sometimes, but some people I have met live life with this “whoo is me attitude” and that makes me sad for them… You have to find the positive and know that it could always be worse…
“I once felt sorry for myself because I had no shoes, then I met a man with no feet”
The second group are those people who have the attitude of “This disease does not define me, nor limit me, the only thing this disease does is MAKE ME STRONGER!!” I enjoy talking with these people. This is the energy that BREATHE 4 TOMORROW wants to bring into the CF community. I feel like if we could start showing the little ones with CF that it is NOT a death sentence and that they are going to live long fuller lives, that our community is going to grow older and older and sstronger and stronger… I consider myself one of these people, I have my hard times and I get down sometimes when I am sick or when I have to go home because I have to do my breathing treatments, but I can usually pull myself right out of it… I welcome each new day with a smile and I say “thank you” and I say it out loud… and on top of it… I FEEL IT!!
I hope with all my heart that I did not offend anyone with this blog. I have just had a really negative person that I have been dealing with in the last couple of days and he really got me thinking about this. I felt bad for him because of his outlook on life. I know that there is negative when it comes to our disease, believe me… and please don’t think that I don’t… I just wanted to share my outlook and I hope that if someone reading this can change their thoughts on their CF, if I can help one person feel a little better then it is definitely worth it.
Thank you all so much!!
As many of you know I enjoy keeping up with everything going on in the CF world. I’ve been following the CF drug pipeline and have become very close with one of the top CF specialists in the world. We often e-mail eachother and ofcoure I always have questions to ask him! Here’s some great info:Denufosol: This is the one year long study I participated in from summer 2006 to summer 2007. It’s a P2Y2 agonist. It was taken 3 times a day via a Pari Nebulizer. I was in a trial where you get 6 months placebo or Denufosol followed by 6 months of Denufosol. I benefitted from Denufosol. It’s currently designed and being studied in CF patients with mild to moderate CF lung disease. It hasn’t been studied in severe CF lung disease- YET. The results will be out from the study I participated in summer 2008. If results show Denufosol was effective in the phase 3 clinicial trial it will become available under the Compassionate Use program through the FDA. I will get to be in the compassionate use program because I participated in the phase 3 trial. I’ll keep you posted on this one. It was developed by doctors at my CF center, and the doctor I’m very close with. Denufosol used to be called INS37217 and it’s been in the works for over 10 years.
Bronchitol: It is made by Pharmaxis. It’s being developed and studied in Austrailia. It’s studied in many different lung disease such as Bronchiectassis, COPD, Emphysema and Cystic Fibrosis. Bronchitol is made from a sugar alchohol called Mannitol. Bronchitol,, is a proprietary formulation of mannitol administered as a dry powder in a convenient hand-held inhaler. It is designed to hydrate the lungs, restore normal lung clearance mechanisms, and help patients clear mucus more effectively. Pharmaxis is developing Bronchitol for the management of cystic fibrosis and chronic obstructive lung diseases including bronchiectasis and chronic bronchitis. Bronchitol,, aims to restore the ability of patients’ lungs to clear mucus by promoting salt and water movement through airway cells to the lung surface. Clearing the lungs of mucus and restoring lung hygeine may reduce infections and the consequent risk of scarring. For those with cystic fibrosis, maintaining the airway surface liquid at normal levels may reduce the pulmonary effects of their disease to a point where lung failure is no longer of primary concern. Bronchitol is currently in phase 3 clinicial trials and Pharmaxis has submitted info to the United States FDA. So, shortly after it’s approved in Austrailia it should be available in the USA.
Azetronam Lysine for inhalation: This is an anti-pseudomonal antibiotic. It’s made from the IV antibiotic called Azactam. It was developed by Gilead Sciences (who also recently teamed up with Parion to develope another medication for CF). It’s used by the Pari Eflow Neb. It’s a very small Neb, much like the size of a hamburger. It’s designed to deliver more efficiently than any other Nebulizer on the market. Also, it’s much faster because it breaks down the particle size of the drugs. Eflow was developed special for Azetronam. This medication will take less than 5 minutes to Nebulizer (much better than our current 15 to 20 minute Nebbed treatments each time!). Warning: Pari Eflow was not designed to be used with other medications such as Tobi. If Eflow is used with Tobi you will get a drug overdose and risk ototoxicity to your kidneys and Vestibular system. Gilead Sciences have submitted a New Drug Application to the United States FDA and are waiting approval. Azetronam is currently avaliable through a Compassionate Use Program for CF patients with low lung function, resistant to many other antibiotics and are in need of medications to treat their Pseudomonas. I believe Azetronam is on schedule to be approved early 2008 for Pseudomonas therapy. It can be alternated with the Tobi 28 day cycle if your doctor prescribes it to you. Which would be more power against Pseudomonas infections.
TIP: This is Tobi inhaled Powder. It’s currently being studied to treat Pseudomonas infections in our lungs, but without the LONG Neb treatments that we currently have with Tobi. This is in clinical trials and the powder Tobi is at higher doses than Nebulized Tobi. It’s shown effective against Pseudomonas thus far in studies. However, I’m curious to see if it shows more effective than the Nebbed Tobi since with Nebbed Tobi we have a compressor to push the medication deeper into our lungs compared to the inhaled powder (much like Advair). It’s possible the Tobi Inhaled Powder will eventually replace the Nebulized Tobi depending on if it’s as effective as the Nebbed formulation.
Parion 552- It’s being developed by Parion Sciences which is also developed by CF doctors at my CF center. It was designed to correct the CF ion transport defects by acting primarily on abnormal sodium reabsorption. Recently Parion teamed up with Gilead Sciences (the developers of Azetronam and Pari Eflow) to form a new better formulation of Parion 552 called Parion-680. Studies will begin in humans next summer with this new formulation. This will also be used in conjunction with Hypertonic Saline and according to my source it will be used with the great Pari Eflow Neb to make treatment times very short & more effective.
The next 5 years in Cystic Fibrosis research is going to be the most exciting in years. The reason is because we’ve never had a drug pipeline like the one we have now. The money that we all raise for the Cystic Fibrosis Foundation is really making a difference in our lives. We haven’t had a new drug for Cystic Fibrosis in over a decade. That’s a long time. CF has always had a harder time raising money because there isn’t enough people who know about CF, and it’s not like Cancer where you can just say the word “cancer” and people know what it is and want to help. There’s only 30,000 CF patients in the USA. Approximately 70,000 in the world. However, 2500 babies+ are born with Cystic Fibrosis every year.
I hope I have explained the mentioned CF potential medications so everyone can understand them. I have many CF friends who just don’t understand all this medical terminology so I wanted to break it down for everyone. I don’t know why..but I seem to have a gift with understanding Medical Lingo. So, I wanted to share some info with all my beloved CF family!
Hopefully in the next several years we can add several more years or decades to a CF persons lifespan and add to the average life expectancy. We don’t know what tomorrow will hold, but the CFF is adding tomorrows everyday! We just need to live life to the fullest, enjoy each day, be thankful for the blessings, and dance in the rain!
My mother spent many hours with an amazing woman named Sarah Morris. Three weeks ago or so I call my mom up. She says that she is just getting done working at a shelter for flood victims in Lewis county. Damn, I thought, here I am in Colorado 1300 miles from my hometown that has just recently been ripped to shreds my a major storm and due to a complete lack of news coverage I’m pretty much oblivious to the devastation. The weather for me was 60 degrees and beautiful, especially for Colorado in the winter. She proceeds to tell me about Sarah, who drove down from Olympia to volunteer time helping at the shelter. Sarah is also starting a not for profit organization called Breathe 4 Tomorrow, has Cystic Fibrosis herself, and just so happens to be looking for someone to help with her foundations website.
I’m a software engineer / web developer / misc tech guy by trade so naturally the mother sees this perfect scenario and in her semi-unwitting way sets forces in motion that lead to Sarah eventually contacting me. Now, usually when people are looking for help building a website or any number of things that I can possibly help them with it is for far less charitable purposes than helping amazing people with an incurable disease find the relief they need. So, at first I was not all that into the idea. Within the first few minutes of emailing and talking with Sarah it was obvious to me that I was destined to help her with whatever she needed from me to aid in making her dream of forming this amazing organization come true.
Sarah is the most optimistic and passionate person I know. I truly believe that she can overcome any obstacle that is put before her and that her and Aaron can and will make Breathe 4 Tomorrow a complete success. Knowing her for the short amount of time that I have has made it obvious to me that she can accomplish anything. She puts the entire worlds needs before her own and gives like I’ve never seen anyone give before in my life. Her presence is an inspiration to myself and to others around her just as everyone in this community has become an inspiration to myself. Although I am not afflicted with CF or any other disease or sickness, in a way, Sarah has cured me from something that I cannot quite put my finger on.
With that I officially welcome everyone to the Breathe 4 Tomorrow blog and website. I encourage everyone to give if they can to what I believe will truly be one of the most amazing CF organizations, and charity in general, in the world. While others are working their way towards finding a cure, Breathe 4 Tomorrow will work towards helping those where they need it most with financial support and hope. Our society often overlooks how draining an illness like CF can be. Families get stuck in no mans land where they cannot afford the things they need, have to decide between food, rent, and medicine while at the same time are not quite able to meet the requirements for assistance. They are thrown into a constant struggle and forced to make decisions that no one should have to make.
Thank you and please spread the word.
Welcome to the Breathe 4 Tomorrow Foundation’s blog. We’re just getting started but check back often for news, events, and information. We’re more than excited to start changing the world for those with Cystic Fibrosis and their families.
