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Rocky Mountain PH Support Group meets Sunday, July 8th, from 1-3pm!
Saturday, June 30, 2012

PHA SUPPORT GROUP NEWSLETTER

JULY 2012

 

Hi Everyone –

 

Summer is well on its way so it is time for the July 8th Group Meeting. Remember, we are meeting at the Kaiser Permanente Building on Havana and Alameda location, due to the remodeling of our old meeting place. I will give you the new address at the end of the letter. Please do not let this new place keep you from coming to the meeting. We will have signs to direct you when you come in to the building. There is parking on the West side of the building since I think that is the only door open on Sunday. You will be directed to the elevator and will come up to the second floor. The room is to the left of the elevator. Remember, John will have signs to direct you to the right place. For some of you that take the highway to meetings, it is very close to 225 and Alameda. Just take Alameda west for about 15 blocks to Havana. It is located on the S.W. corner, so take Alameda across Havana and turn left into the parking lot. I hope that this will help you find us.

We are starting to get things together for the Silent Auction gift baskets. We already have one for “barbecue and outside grilling,” and one is being made for younger children (5-9), and one is being made for “Spa Time.” If you have any other suggestions, bring them with you to the meeting. If you want to donate items or money, they will be appreciated. These are going to be from the “Group” for auction at the “5K Run for Phun 2012” on September 16, 2012. I will have information about the Run at the meeting.

I want to remind everyone who is on Flolan or Remodulin to save their batteries for the Children’s Hospital. I will deliver them to the hospital for you or if you have any other place to donate, please let me know. I know that personal use is good for your own children or grandchildren, but if you have no need for them, the hospital is very appreciative for them.

I also need to pass on some news of a group member who passed away in May. He was Victor Dileo who fought hard against “Scleroderma and PH.” I know I will miss his great attitude and kindness that he had for others.

I also want to thank Robin Hohsfield and Jennifer Davis for speaking at our last meeting and supplying lunch for us. This was sponsored by “Gilead.” Thank you again!

This meeting is going to be a meet and greet group members. We have had so many new members in the last few months that we need to find out how they are doing and if we can help or answer any questions, they might have. We get so busy at our meetings that we forget to introduce ourselves to them and make them feel welcome. We are going to have 20 minutes given to Mary Schwartz of American Security Professionals. She would like to give us some valuable information about all kinds of security units we can buy. Maybe you have been thinking about this and wanted some information.

We are going to have refreshments supplied by one of our group members, Elaine Rule, who is no longer with us, but as one of her last wishes, she asked her daughter Jennifer, to make sure she bought lunch for us. We thank her for this gift and she is in our thoughts.

It is time for the 10th International PH Conference and Scientific Sessions. It is being held in Orlando, Florida on June 22-24th. I will be going to the conference, along with Bev Early, Mary Wright, and Lindsay Collins. Maybe more of you are going that I am not aware of. We will have a lot of things to talk about at the meeting and many goodies that we pick-up. I am very excited and look forward to going.

 

New Address of our new meeting place:

KAISER PERMANENTE

EAST DENVER MEDICAL OFFICE

10400 EAST ALAMEDA AVE. DENVER, CO 80247

 

We hope to see you there.

 

Karen and John Wright                     

Rocky Mountain Pulmonary Hypertension Support Group Newsletter
Monday, April 30, 2012

PHA SUPPORT GROUP NEWSLETTER

                                                                                                                                           23 April 2012

Hi everyone,

It is time again for our group meeting so please mark your calendar for 6 May. We are having the meeting a week earlier this month than normal because of Mother’s Day being on the 2nd Sunday. This is also a reminder to acknowledge you mother, wife, daughter, grandmother, and anyone else that deserves a “Happy Mother’s Day.” Also, remember that we will meet at the Kaiser Permanente Building that we have been going to for the past several years. I will give information about the new meeting place below and to you before our meeting in July.

We hope everybody has had a good spring so far. We, I mean John is starting to work on the care of the yard work now that he is able to move again without major back pain. He had back surgery in February and it was very successful. He is a new man now! I think I will keep him.

I went to “Children’s Hospital” to drop off batteries that were brought to the meetings. If you have any that you have used in your pump please bring to me and I will donate them. The nurses are very happy to receive them so they can be used for remotes and hand held electronics. We do not want to have any of our younger generation get upset because they need a battery “NOW.”

 In addition, I would like to ask anyone if you have any ideas for our meetings or would like me to find a speaker you want to speak at a meeting. We are always looking for something new.

About the new meeting place, it is at the “Kaiser Permanente Building” on South Havana and Alameda Ave. The address is:  

KAISER PERMANENTE

EAST DENVER MEDICAL OFFICE                                                        

10400 EAST ALAMEDA AVE. DENVER, CO. 80247

I am not sure if I can make a map for everyone but I am sure you can get this off Map Quest. Ask me if you need help. Now remember we will not meet there until our July meeting.

We are happy to have Jennifer Davis, Senior Therapeutic Specialist, Cardiopulmonary Division from “Gilead” to sponsor our meeting and bring refreshments. Robin Hohsfield, RN from the University of Colorado Pulmonary Hypertension Center will be our speaker. She will be speaking on “Insights on Health Insurance Options.” I hope to see all of you at the meeting.

I also want to thank Durbin Swartz, from the America Lung Association of Colorado for speaking at our March meeting. I attended a meeting with Durbin at the Lung Association and the people who are suffering with COPD and other breathing issues. They talked about their up and coming “Moving Mountains” conference that will be held in October. It is an event that you do not want to miss. They are going to talk about PAH this year. The cost is low and a bag lunch is included. They have great speakers and exhibits to wonder thru. I will let you know when I get the invitations.

John and I would like to ask one favor. We would like to take pictures of everyone that attends our May meeting. We may have to take two or three groups as we have grown. So please stick around after the meeting so we can get everyone’s picture. We would like to submit the pictures and a story to the PATHLIGHT magazine.

 

See you there,

Karen and John Wright

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.