Northern VA Pulmonary Hypertension Support Group
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April 2016 Topic: Care for the Caregiver by Accredo
Tuesday, April 12, 2016

Care for the Caregiver

23 people in attendance


5 minute pickups:

1.  Re live a photo memory, listen to favorite music.

2.  Slow down your breathing.

3.  Chocolate break!! 1.4 oz dark chocolate. Contains antioxidants to combat stress. Feel good endorphins.

4.  Floating your worries away with visualizations.  Tie a note to a balloon and let it fly away.

5.  Fantasy Shop, virtual shopping, don't buy!

7 Ways to Schedule ME Time

1.  Schedule some time for yourself first thing in the morning.  Do a Mind Sweep (list making)

2.  Say No!

3.  Create a personal space for your downtime.

4.  Spread work around, delegate, ask for help

5.  Shortcuts -  pay bills online, use peak energy times, order food

6.  Unplug for electronics.

7.  Buy time.  Hire neighborhood kids, order take out, hire cleaning service

ANY KIND OF MOVEMENT IS GOOD MOVEMENT! (even going to the mailbox)



March 2016 = Meeting topic was about 10 Wishes and Estate Planning
Tuesday, April 12, 2016

I was absent for this meeting.  However, I understand a good starting point for this topic  - is finding a brochure packet called 'Ten Wishes".



NIH Meeting Notes and Contacts November 2015
Monday, February 15, 2016

Michael Solomon MD was the presenter.

Clinical Translation Program in PAH markers Mechanism and Targets.

NIH is looking for people who wish to participate in their research programs.  You will need to be screened for approval.  They are trying to create a bank of patients that are WHO I  - in order to have a sufficient number of patients for research study.  The studies goal is to target other PATHWAYS to PH.

Mentioned that there are several tests that can be done at NIH free of charge as they relate to PAH.  Researching new methods to target inflammation issues.  Our current medications do not address this.  They believe spirolactone has an anti inflammatory response.  It's cheap, zero side effects and has been around a long time.


Grace Graninger, RN


Bonnie Harper, Rn



October 24th Meeting Notes - Emergency Preparadness with EMTs
Monday, October 26, 2015

Next Meeting November 14th, Miklos building.  RSVP to Betsie or Janet.

Holiday Party Dec 13th, PJ Skiddos - same place as last year. TIme:  6ish

Color your World Perwinkle Day/ PH Awareness Day  Nov 1

CTEPH Awareness Day Nov 17

Nov 19, Congressional Luncheon - link has details


18 patients attendees at today's meeting plus EMTs

Guest Jerry McGrath, Accredo, Customer Relations Specialist

Thank You Jerry and Accredo for sponsoring our lunch!

Thank You Fairfax City Firehouse 433 for sending very knowledgeable EMTs


1.  ICE contact list in your cell phone. One of the first things EMT looks for in an emergency situation.  Bracelets Id alerts, Seat belt alert, USB sticks

2.  If you have oxygen in the home - use signs in the front windows, especially liquid oxygen.  Important for firefighters - combustible.

3.  File for Life - Red magnetic file.  Fill it out and put on frig.  They will look for this when they enter your home if you are passed out.  Good idea to carry with you to the hospital too. Plan in advance!

4.  Call Fire Marshal ask for a key box/lock box.  Keep this outside with your house key. Is a good way for EMT and firefighters to enter the home plus gets you registered into their system.

5. Oxygen tanks  do not put in trunks.

6. Great handout on fall risks and having a clear pathway for EMTs

Group picture taken for Awareness Month!


Betsie, Ron and Janet Arp travel to Sterling VA Congresswoman Barbara Comstock
Friday, October 23, 2015

October 14, 2015

Last Wednesday we visited Lucy Norment, the district director for Congresswoman Barbara Comstock.  Our intent was to talk about 2 patient bills involving Pulmonary  Hypertension.  Ron Arp and Betsie Miklos rocked it!!
Betsie is an expert at explaining PH and its progression.  Ron gave an awesome cost comparison PH drug that costs more for PH patients vs other people.  Revatio (PH drug) costs more than Viagra.  I provided a cost breakdown of my drugs to easily visualize the di...fference.

The Bill is HR 1600 Patients Access to Treatment.  Relates to Tier Drugs and how speciality drugs (no matter the disease) tend to be higher than standard drugs.  We pay more out of pocket with co-pays. The Bill asks for an across the board rate.

If you take speciality drugs - contact your Congress person by email, phone or visit to explain how this affects your pocket on a monthly basis.

August and September Group News: Marathons, Painting fundraiser
Friday, October 23, 2015

August there was no planned support group meeting so that everyone could enjoy the rest of the summer!

September's meeting was canceled due to lack of attendees.

Janet, Lina, Debbie and Chris attended a fundraiser called PH Paint Night.  We painted a fall tree scene.  However, Janet painted a PH tree and the Drell's painted minions!

Philly Rock and Roll Marathon!
Press Release by PHA:

Featuring Latoynia Harvey from our support group!


July 25, 2015 What is the Spoon Theory?
Friday, October 23, 2015

Presenter:  Janet Arp

Flowers donated by Shoppers Food Warehouse in Sterling, VA.

Everyone had a chance to update us and say Hi.

Janet presented the story of the spoon theory.  Christine M. (author) is asked by her friend "what it felt like, not Physically, but what it felt like to be ME to be sick??  Christine explains:  the healthy have a luxury of a life with choices.  A gift most people take for granted.  Most people start the day with lots of energy an can do whatever they desire.  For me,  I have 100 little jobs in one.

I divided my jobs/tasks into 10 ten spoons and that is all I can manage for that one day.  If I have a big task the next day, then I need to save my spoons up for that task.

Keywords:  slow down, plan ahead, conserve energy,consider weather, sometimes you cant just do it all.


June 27 2015 Support group meeting was canceled due to weather conditions in the area.


May 23, 2015 Meditation & Yoga for Good Health
Friday, October 23, 2015

Guest Speaker and Yoga/mediation expert was Ms. Emily Jeffers

We did quick introductions and welcomes.  Talked about New Group called Generation Hope for 18-40 yrs old.  Lina McDowell 703-606-8635.

Handed out Wyndmere and CXlear samples.

Emily took us through some basic meditation sequences and relaxation and then gave us a chance to release negative energy or just say the things that were on our mind.


April 2015 2nd NOVA PH Walk
Friday, October 23, 2015

March 28, 2015 Right Heart Catherization Notes
Friday, October 23, 2015

with Nargues Weir MD, FCCP, from INOVA Fairfax Hospital.

We had 27 attendees with several visiting patients.  Dr. Wier gave an overview of pulmonary hypertension and how it affects us.  She also provided a good representation of how the heart and lungs work together.

New drug Selexipag was discussed.  Oral drug.

Oral Remodulin Pill was discussed.  Still has side effects. 3x dosing. Clinic has done 2. no definitive results


Thursday, January 29, 2015

Next meeting:  February 21, 2015

Location:  Herndon Fortnightly Public Library

768 Center Street, Herndon, VA

Look for the small conference room

Time:  12noon -2pm

Topic:  Healthy Resolutions with a Taste Testing event

RSVP Janet Arp


Catching Up.....
Tuesday, January 27, 2015

Since September we had a group meeting in October and November.  November was our traditional 'potluck' get together.  We met many new PH patients and friends.  We celebrated PH awareness in November by taking a new group picture.  This year we also celebrated CTPEH awareness with new bracelets and a group arm picture.

Christmas was at PJ Skidos were fun and food was had by all.  We had many special guests from our pharmacy companies and little Esther Lui  came for a visit and said hello to everyone.

Perwinkle beaded angels were given as gifts from Helen Lester in hope that there is a cure for PH soon!



See you in February

Meeting notes September 27, 2014
Tuesday, January 27, 2015

September 27, 2014



Discussed upcoming focus groups and seminars that are available.

Talked about recent PH forum dinner.  We learned that 'you must flow to go'

Sent gift card to little Ester Lui

CTEPh Nov 18 awareness day

Talked a little about emergency preparedness in September.  Have back upsupplies, replace broken things, review all your medication list and update, check 02 tanks, obtain a power loss letter from electric company.

Found some penpals for Maya Poole

Group Discussion:

What were some things you did this summer to help you overcome PH, accomplishments etc.


Notes from July 19, 2014 Meeting: Topic: Sleep Apnea
Monday, September 15, 2014

This meeting was a combined meeting of PH, CF and Lupus patients.  There were over 31 in attendance.  Our biggest meeting ever.

Dr. Nargues Weir did a great job on explaining sleep apnea and things were should know as patients who have sleep apnea.

Wayne share his commendation with Betsie, Janet and the group.  Betsie share the 'blueberry' story by Pam Mathis.  It is now being used in several ph association booklets.

Debbie Castra from PHA also provided some updated literature and talked to us about focus groups.

Next meeting is September 27th at Chantilly Regional Library

Our little Group of BOYSCOUTS !! are in the PHA Pathlight magazine
Monday, July 14, 2014

Check out the latest edition of PHA Pathlight.


Meeting Reminder: Saturday June 21st at noon. Herndon Fortnightyly Library
Wednesday, June 18, 2014
Herndon Fortnightly Library
768 Center Street
Herndon, VA 
703-437-8855 Library phone number
Room 1

Time: noon
Lunch will be provided by Christine Huber, United Therapeutics Corp 


rsvp Janet Arp email or 703-421-6760
Invisible Illness/Chronic Illness
Tuesday, May 27, 2014

May 2014 Support Group meeting notes
Monday, May 26, 2014
NOVA PH meeting
May 24, 2014
Reston Library
Our facebook NOVA PH support group page is up and running with current news and information.
PSAs for PH awareness
-American Idol finale last week
-Taxi cabs in NY and Philly
-Announcement by Queen Latifah about her mother
-Florence Henderson has recently posted about PH
In November - there will be a PSA displayed across the the NASDAQ in New York Times Square. Second time in PHA history
We are still collecting pop tabs.  A donation of $10 was sent to Robyn Barst Pediatric foundation.  Currently have another 6lbs from one of Janet's neighbors.
Introductions:  New member Lynn Levine and Joe Wahlee.
Trivia game (3 winners!)

Talked about Invisible Illness/Chronic Illness.
Discussion Questions:
Do you think PH is an invisible illness or visible illness?  or both? 
The biggest adjustment I've had to make is?
A gadget I couldn't live without is?
The hardest thing to accept about my new reality has been?
Next Meeting June 21st 12-2 at Herndon Fortnighly Library. Topic: review of PAH living with PH website and programs. Sponsored by United Therapeutics. Christine H.
Northern VA PH Support Group Goes for A Walk...4/12/14
Monday, May 05, 2014


Cub Scout Pack 97 Collects Pop Tabs for Pediatric PH
Monday, May 05, 2014

Cub Scout Pack 97 of Sayreville, NJ collects pop
tabs for the
Robyn Barst Pediatric Pulmonary Hypertension Fund.

In September of 2013, Cub Scout James started collecting pop tabs for his aunt Lucille. 
Lucille has a condition called Pulmonary Hypertension.  Mrs. Kelly (his mom and cub scout leader) helped him start the pop tab collection campaign.  Pack 97 proudly shows all the tabs they collected.  We are proud of them too!!

The Northern Virginia Pulmonary Hypertension Support Group also began collecting pop tabs in October.   A donation of $10 has been made to the
pediatric fund so far and we hope to add more before the end of this year.

Friday, March 14, 2014



Monday, March 10, 2014

What do you WANT from your NEW PH drugs? what are your suggestions?
Friday, March 07, 2014

See the link below for a blog posting talking about the FDA's seminar dealing with PH drugs.

New ACCREDO point of Contact: Ms. Susan Shomaker, RN, MSN, CRNI
Friday, March 07, 2014

Ms. Shomaker is a a Cardiopulmonary Account Manager for Accredo.  She was at our support group meeting in February.  She has offered her to help with future meeting and answer any questions or concerns you may have as a patient.

Her contact information is:


Recommendation: A perfect bag for pump wearers!
Wednesday, March 05, 2014

Lucille recommends this web site for bags/purses for your pumps!!

WHAT A FUN GROUP WE HAVE!!!!! pictures
Tuesday, March 04, 2014




MEETING NOTES: February 22, 2014 - Important upcoming dates!
Tuesday, March 04, 2014




LUNCH BY PHA, Sarah and Johanna



VOLUNTEER FB GROUP PAGE MANAGE - Johanna Hyman volunteered!






29 Social Media event (FB)


Mich arranging. Fairfax Corner, RT 50, RT 66, RT
29 Fair Oaks Mall
Walk flat surfaces on sidewalks. Start/Stop at
Potbelly Resturant. There will be an area for possible raising awareness and
education to the public.

12th, 11am




PH Conference in Indianapolis In June 2014

March support group meeting Date:  March 22 2014. 
Location will be 10300  Eaton
Place, Suite 300, Fairfax VA.  There will
be someone at the door to let you in). 
Topic:  Sleep Apnea, Cpap Masks

PH Song -”BE BRAVE” i-tunes launch March 29th.
Social Media Event. Spread the word among friends on your Facebook pages/walls.  Some of the proceeds from I-tunes go back to

April 12, 11am. 
PH Walk a Mile Event in Fairfax.

Fairfax Corner, RT 50, RT 66, RT 29 Fair Oaks
Mall.  Walk flat surfaces
with sidewalks. 
Start/stop at Potbelly Resturant. 
There will be an area for possible PH awareness to the public.  More details as we get closer.


Take a Survey! How would you rate your Specialty Pharmacy?
Tuesday, March 04, 2014

It's here! It's here! Ready to make a change in your experience with specialty pharmacies? Ready to tell them what works for you and doesn't? Now you have a way.

Washington Post Article or PAH article
Tuesday, November 12, 2013

The link for the following article was in the Post Health section yesterday (Tues).   I thought it was well written and a nice "awareness" happening.
There was also an article in one of the Costco magazines.  The article raised awareness for PAH as well.
Coming Soon: Feedback Loop for your Specialty Pharmacy
Friday, November 01, 2013

PHA has a new initiative dedicated to collecting information about how well specialty pharmacies are serving PH patients.  We'll be using this information to promote improved service through a Specialty Pharmacy Advisory Board.


PHA will collect your input through a feedback form.  The form will allow you to share your experiences directly with PHA and (if you wish) the specialty pharmacy that provides your PH medication.


For more information about this program or other initiatives in PHAs Insurance Advocacy and Education Program contact 301-565-3004 x749 or visit



Friday, November 01, 2013

PHA Midwest Chapter Announces Blue Lips Challenge



The PHA Midwest Chapter is proudly spearheading the Blue Lips Challenge, a campaign to make PH a household term and generate funds to support PHA’s mission. Blue Lips Challenge participants will compete in a marathon of challenges throughout the next year, culminating in a grand finale in October 2014. Incentives and prizes will be awarded along the way. It’s super easy to enter, fun to play, and FREE! » Learn more and join the challenge today



LIVING PAH. com has been updated with new resources
Saturday, October 26, 2013

Living Pah - Providing a Community of Support is the website

They have rebuilt and refreshed the website to give those living with PAH better resources and a new look to help you better manage your care.


New Section: Voices of our Community

A New Doctor Discussion Guide

Check it out!


MORE HOPE! another new drug!! OPSUMIT FDA approved for PAH
Friday, October 25, 2013

US FDA Approves Opsumit To Treat Pulmonary Arterial Hypertension RTT News 

The U.S. FDA has approved Opsumit (macitentan), a new drug to treat adults with pulmonary arterial hypertension or PAH, to delay disease progression.


10/19/2013 3:45 PM ET 

The U.S. FDA has approved Opsumit (macitentan), a new drug to treat adults with pulmonary arterial hypertension or PAH, to delay disease progression. The effectiveness of the orally available endothelin receptor antagonist was established in a long-term study in PAH patients with predominantly WHO Functional Class II-III symptoms treated for an average of 2 years. Opsumit is marketed by San Francisco-based Actelion Pharmaceuticals US, Inc. The company noted the FDA approval of the drug was based in part on data from the landmark phase III SERAPHIN study.


complete story at:



Instructions for doing a PH Awareness Proclamation
Thursday, October 24, 2013



Full instructions are on the PHA website.

There is a video that you can watch as well.

For those not using the internet –here are the basic instructions.

1.Pick your favorite local elected official or someone that is in your district/county.  Examples:
Supervisors, Board Members, Mayors, council, delegates, etc.

2.Contact their office (secretary) first.  Tell them you are interested in having a PH Awareness proclamation issued by your local official.  Ask if they have a procedure.  If not, tell them you want to mail them the information.

3.Write a letter.  See examples.  Be sure to attach the handout called 'all about PH' and a sample of how to do a PH Awareness Proclamation (in case the secretary has never done one before).  Make the sample specific to the official you are sending it to.  Mail it out.

4.Follow up in a week or so on your letter.  Ask if they have to vote on the proclamation.  If yes – can you attend? Great photo opportunity.  This is optional.

5.Obtain the PH Awareness Proclamation.  Let Janet or Betsie know right away. 
Contact PHA to let them know your success.  Sometimes PHA likes to do media statements.  They also keep track of the numbers. Last year there were 80 proclamations.

It is not critical that these proclamations be completed by the end of November.  They can be completed anytime and still count.

This is voluntary and you would only have to commit to doing one (1) proclamation.  It's ok to work together.  If you are unable to complete the process that's ok too. 

Thank You for raising PH awareness for Northern VA.



PH Awareness Month (November 2013) Schedule of Events by PHA
Wednesday, October 23, 2013

November 1, 2013 is designated as Online Awareness Day.  Depending on the tool you use, you can spread awareness from the comfort of your home on facebook, twitter, pinterest, blogging, email etc.  Go here to learn more:


November 12, 2013:

PHA’s Congressional Luncheon & National Advocacy Day
Tuesday, Nov. 12
Cannon House Office Bldg, Room 345 Washington, D.C.

The luncheon is free to attend, and transportation is provided from PHA's office.
RSVP to us by email or by calling 301-565-3004 x753


 Website listing all events and ideas:


A Story: Have you ever heard of the Spoon Theory????
Sunday, October 20, 2013

Hi Everyone,

I ran across this article about 2 months ago.  It was created by a Christine Miserandino.  She has Lupus.  I have

never heard of the spoon theory before so I googled it.  The theory applies to everyone with an invisible illness or chronic

health condition.  Well - that applies to PHr's too.


The story is long and have a box of Kleenex ready.  It can be found here:


or there is a VIDEO!


The but you don't look website is loaded with interesting things too.

Another PHer showed me a place where I could buy a keychain too.  If you are interested in the keychain go here:  I think they were $3.




THERE IS HOPE!! New drug Adempas (riociguat) approved
Monday, October 14, 2013
For Immediate Release: Oct. 8,
Media Inquiries: Steven Immergut, 301-796-7507,
FDA approves Adempas to treat pulmonary hypertension
The U.S. Food and Drug Administration today approved Adempas (riociguat) to
treat adults with two forms of pulmonary hypertension.
Adempas belongs to a class of drugs called soluble guanylate cyclase stimulators
that help arteries relax to increase blood flow and decrease blood pressure.
It is intended for patients with chronic thromboembolic pulmonary hypertension
(CTEPH) after surgery or patients who cannot undergo surgery, to improve their
ability to exercise. Adempas is also indicated for patients with pulmonary
arterial hypertension (PAH) of unknown causes, inherited or associated with
connective tissue diseases, to improve their ability to exercise and to delay
clinical worsening of their condition.


Full Story:

Monday, October 14, 2013



Sean and Britt McNiff have started a nonprofit organization called Beats Per Mimi, Inc. in honor of their 4-year-old daughter Mimi who has pulmonary hypertension. Beats Per Mimi raises awareness for pediatric PH, raises money for PHA's Robin Barst Pediatric Research and Mentoring Fund, and sends out packages of support to families of kids with PH.

Each family receives a teddy bear with either a broviac, PIC line or zebra striped backpack. They also receive pediatric PH awareness T-shirts and a "Hospital PHun Pack" filled with face paint, window markers, streamers and other fun stuff

 Full Story:

Exercise Advice and Notes from Lila John's Presentation
Friday, September 27, 2013

Notes from Lili Johns discussion about exercise
and fitness

We NEED to move, be active and do something.

Group suggestions:

Take 5 minutes for a walk each day

Do knee bends

Find an exercise that is fun for you – alternate
exercise routine

swimming, walking, biking, rehab, workout videos, tai chi etc

Germs in public places, others staring at you because you have oxygen or
because you exercise at a slower pace.  You have good days and bad days. Time, transportation, tired, weather related issues, your having a sad day.

ACTION: Get an exercise buddy – make it your day
together and fun

Strict adherence to a program. 
Have a plan to 'restart' if you have a break in exercise  (hospital stay, vacations etc).  Feel better exercise is the goal. 

Lila can help design a program for you.  Flexible schedule and times.

Quote from Latoynia:  Thankful I'm breathing – I get up and go for
a walk every morning first thing.

NOVA Support Group Meeting September Notes and Information
Sunday, September 22, 2013

AGENDA PH Support Group Meeting 9/21/13
Lunch sponsored by PHA organization Thank You

Lila Johns -Thank You for the room space and the
tour today


Reminder: At each of our mtgs we carry PH related brochures and information.  We have info on insurance, the PHA org, caregiving etc. We also have the PH bible and PH short guides available for checking out.

Christine Huber joined United Therapeutics.  She was with Nathan, CVS caremark etc.  She is partnering with Andrea Baker.

Next meeting is October 19th at Miklos Systems Fairfax VA. It will be our 1 year anniversary.  Be prepared to take a group picture. lavender colors or casual?  Lunch will probably be sponsored however we will try to have a special cake.  Speaker: Rachel Cash, Financial Coord. Fairfax INOVA. (expenses related to serious illness, soc. Sec, resources,medicare)

Update on Tshirts: 
Betsie and I haven't forgotten about putting this together.  When Betsie gets back we will start this up again so that we can have tshirts for next years events.

November is PH Awareness month.  I attended a phone call where options

for support groups were discussed.  PH proclamations by counties, 6minute walk in the parking lot with pictures (sponsors), media (news story), raffle/fundraising, lend us your lips campaign (MD event example) at public place. Need your ideas and we are very interested in businesses that can donate raffle prizes, space or food items for any event we plan.  I think event will be early November to avoid extreme cold weather.




  1. Remember to check out our own web page for monthly
    updates.  I have also been updating the
    BLOG with up to date events and news about PH. Easiest way to find the
    page:  Google --> Northern Virginia PH
    Support Group.  Now look for the link
    that says →    “back to the group site”

At this point you will see the main page and the
blog is on the left column.


  1. October 1, 2013. 
    PH Forum dinner and discussion with Dr. Nathan. Washington Marriott. Pre
    Register.  Details on the blog.


  1. October 6, 2013 Baltimore Hope Walk. Inner Harbor.
    $25 register. Details on the blog.

  2. Information for the INOVA Fairfax Pulmonary
    Rehabilitation Program. This is the official PH Rehab program offered by our
    local area. 

Address: 3300 Gallows Road, Falls Church, VA  22042. 
Point of contact: Mrs. Gerilynn Connors, or (703) 776-3392.


  1. This group is participating in the POP TABS Fundraiser for Pediatric Research. 
    Collect your tabs and brings them in each meeting.


  1. Josh Griffins from Pulmonary Hypertension Association is participating in a fundraising event called PH Peddlar: A 3000 mile journey.  He's peddling from now to June 2014 to raise funds for PH. He needs sponsors.  His web site is found on Facebook by searching for PH Peddlar.


  1. November is PH Awareness Month.  Need ideas and what this group is willing to
    participate in for awareness.  We are also looking ahead for support group planning for the remaining 3 months.


6 minute walk in the parking lot, new group pictures, 1 year support group
anniversary (October), County PH declarations, Media news reports, Lend us your
BLUE lips campaign at a public place. 
Christmas – collect toys for the toys for tots organization from our
NOVA support group (community event)? 
Possible way to get media aware. 
Sponsors for our individual 6 minute walks (fundraise for PH), ask local
businesses for donation of goods, food etc for any event we decide on.

NEW Spanish PH Support Group Forming - Silver Spring MD area
Sunday, September 22, 2013

Hey guys, I was wondering if you could share a flyer for me to your members?

It's in Spanish. I have started a Spanish Language group at the PHA and next month

will be our first meeting. I am hoping to get a lot of people in the group

so that we can continue it. :-) 



Roeder Road, Suite 1000, Silver Spring MD, 2091




NEW PH Support Group Forming: Prince George's County & Southern MD
Sunday, September 22, 2013

Prince George's County & Southern MD Pulmonary Hypertension Support Group


Join us for our firs tMeet & Greet  on Saturday, September28,2013; 12:30pm-1:30pm
Golden Corral Restaurant
2800 Crain Highway
Waldorf, MD
Lunch provided courtesy of the PHA Support Group Central Fund

We need to know by 10am, Thursday, September26, who is coming for a head count:

Kimberlee 301-404-7548, or reply to this email (

Sharing: Kayla Nicole from the PH Facebook Community Custom Bear
Sunday, September 22, 2013

Kayla Nicole went to BUILD A BEAR WORKSHOP and had 

a custom Pulmonary Hypertension Build a Bear made for

her daughter who has PH.  They named the bear HOPE.  Isn't it cute!!!!!




PH October Events ( Baltimore Walk for Hope and Patient Phorum Dinner/Discussion
Friday, September 20, 2013

Patient PHorum series II

A panel discussion for patients and their caregivers.

October 1, 2013, 6:30-8:30 Washington Marriott, Wash DC

Georgetown II Room (located lobby level)

1221 22nd Street NW

Free Valet Parking

Featured Panelist:  Dr. Steven Nathan

RSVP Jennifer Roe-Wilson 866-495-5053



Baltimore Walk for Hope

Rash Field and Inner Harbor Promenade Baltimore MD

October 6, 2013 8am to 12:30

Danielle Clifford at 301-565-3004 x763

Registration $25/$35 after 9/30/13



FACEBOOK ONLINE PH Family Support Group - Patients from around the USA! Very informative
Thursday, September 12, 2013

I thought I would post the link to the Facebook PH Family online support group.  It is a closed group.  Janet Arp or Sarah Brackett can submit your name for approval so that you can be a part of this group.  I am one of the Admins and Sarah is active within the group.


There are patients from all over.  We come together on Facebook to talk about our daily struggles, to share our joys and good news, to get advice and compare notes.

 It is a high recommend for newly diagnosed patients.  It's a safe and comfortable environment to vent as well.  In general only patients and caregivers are allowed to join the site.




Log into your personal facebook account.

Search for PH Family

The group screen will show up and you will see my name right away as an Admin.

Select Join Group.

Email me direct for faster approval at

If another Admin contacts you before I do - just mention my name

FUNDRAISER for Barst Pediatric PH Research - Collect POP TABS
Thursday, September 12, 2013
The Robyn Barst Pediatric PH foundation is collecting POP TABS.  The goal is to have continuous donations of Pop Tabs to help generate funding for research in the pediatric field of PH.  It looks like some of the funds will also go to general PH research.  So, start collecting your POP TABS for PH and bring them to the monthly meetings. 
When we have a bunch, I will send them to the organizers. 
Thank You,
Notes from July 20, 2013 Indoor Potluck Picnic Meeting
Thursday, September 12, 2013


Miklos Systems in Fairfax, VA

Potluck and open discussion.

A wonderful assortment of foods and snacks were available.  Everything was delicious.  A Big THANK YOU! to everyone

who came and brought food. 

Betsie shared her experiences with NIH research testing.  Johanna's sister works at INOVA Fairfax Hospital and shared some insight with us about bed assignments and all the new changes at the hospital. 

No meeting in August.

Next meeting set for 9/21/2013 at Lila  Johns Exercise Center in Falls Church, VA.



NOTICE: Washington DC Patient PHorum October 1, 2013
Thursday, July 18, 2013

Washington, DC Patient PHorum sponsored by United Therapeutics Corporation

Join other patients and caregivers in your community at a FREE educational dinner meeting about the management of PAH (Pulmonary Arterial Hypertension) disease.

Tuesday, October 1, 2013, 6:30pm-8:30pm

Washington Marriott
Georgetown II Room
Located on the Lobby Level
1221 22nd Street, NW
Washington, DC 20037

Complimentary Valet Parking Provided

Venue is located near Dupont Circle Metro and Foggy Bottom Metro Stations. Contact Metro for information on schedules and planning a route.

"Series II" of the Patient PHorum:
- Different factors that may help determine a PAH patient's course of treatment.
-A review and discussion of current treatment practices using different classes of PAH drugs, including Prostacyclin class therapy.
-Evaluating your Functional Class and ongoing monitoring of your disease
-Effective communication with your healthcare team.
-Empowering yourself to take an active role in your disease and treatment.
-The important role that caregivers play.

-Steven Nathan, MD, Advanced Lung Disease and Transplant Program at INOVA Fairfax Hospital

-Traci Houston, RN, MSN, Pulmonary Hypertension Program at Johns Hopkins University Hospital

-PAH Patient

Salad Mixed Field Greens with cranberries, candied walnuts, goat cheese and red wine vinaigrette

Select One Entree
-Oven Roasted Chicken Breast with Fresh Honey Thyme Gravy, served with Whipped Potatoes and Sautéed Green Beans
-Grilled Salmon with vermouth chive sauce, served with Whipped Potatoes and Sautéed Green Beans

Freshly baked breads, coffee, tea, soft drink and ice tea service included.

Dessert Mango Sorbet

All entrees are low sodium. If you have other dietary requirements, please let Jennifer know when you register.

Early registration is advised as seating is limited. To register, contact Jennifer Roe-Wilson: call 866-495-5053 or email: Provide your entree selection when you register. **This event is for PH patients and caregivers only.

Forward this email or print and share with PH patients and caregivers in the area. Thanks!

NOVA Support Group Meeting June 22, 2013 Emergency Preparedness with PH
Wednesday, July 03, 2013
Emergency Preparedness with PH                                                                                          

June 22, 2013 at Miklos Systems Fairfax VA

16 Attendees

Next Meeting July 20, 2013 at Miklos Systems Fairfax VA

Guest Speaker today was Karen Brown from Accredo.  Lunch was from Ruby Tuesday's provided by Accredo.

For a limited time, if you sign up with PHassociation - you will receive a free copy of the PH survival guide.

We talked more about Tshirts/Shirts and logos.  Sarah's daughters have drafted up some ideas to get us started.

The popular item of discussion was having a bracelet that was a USB stick.  On the stick you could included all of your emergency medical information.

Several handouts were provided by Karen Brown.

Several of us have different methods for making sure we have our medical information with us.  Some prefer using paper copy and tucking away in purses.  It was stressed that we should all have a backup medical supply bag with us at all times.

It's best to plan ahead, have your medicine list ready, maybe have a 'go' back ready for the ER, have extra medicines handy.


NOVA Support Group meeting May 11, 2013 Traveling with PH
Friday, June 28, 2013

Traveling with PH Open Discussion

Location:  Reston Regional Library, Reston VA

Lunch provided by the PHA central fund

22 attendees

Several information handouts were provided.

Next Meeting June 22, Miklos Building Fairfax VA

Good News:

As a result of call in day 2 new sponsors.  Rockam from IL and King from NY.

FDA patient focused drug program - PH was selected as one of the diseases.

PH selected as research area for DOD grant program. PEER review medical research.  We are among the top 30.


We talked about World PH day on May 5th and all the events surrounding it.  Talked about getting more involved next year with the Virginia events. VA does the picture mosaic and the flames of hope.  Flames of hope is a living symbol in honor or memory of a loved one with PH.  It can also serve as a thank you to someone special (caregivers, nurses etc).


plan ahead

contact oxygen for tanks at hotel

plan for down time (rest)

rent scooter if a lot of walking is involved

discuss oxygen options with/RT

use airline website for info on equipment

airport letter on physician letterhead (oxygen, meds)

Take your meds with you as carryon

use your cell phone to take pictures of medical list, letters etc

check out the area where you are heading for nearest medical facility

visualize your trip and possible problems

stay on all your meds or adjust as necessary (diuretics)



Janet recently used (800) 375-6060 to rental a portable oxygen machine for her trip to Arizona.  The cost for 8 days and nights was $407.  It was mailed to her home.  She had to ship it back upon return. Shipping costs was included.  It was lightweight to use and the batteries were lightweight too.

NOVA Support Group Meeting April 20, 2013
Friday, June 28, 2013

Guest Speaker:  Okasana A. Shlobin, MD FCCP

Location:  Miklos Systems, Inc, Fairfax VA

24 attendees

Dr. Shlobin presented an introduction of pulmonary hypertension.  Along the way she took the time to answer questions.  We had one newly diagnosed patient who was recently diagnosed so this presentation was very helpful for her.


Dr. Shlobin's second presentation was on new drugs that will soon be available.  Please ask your doctor or do further research on the internet.  These are just brief notes.

Macitentan-Seraphin trial (3 yr trial)-results have shown walk test improves and less hospital visits.  Could replace TRACLEER.  Tracleer will soon go generic.

Riociguat - not for sildenfal patients.

Idea of TSHIRT logo was presented and talked about - Betsie asked for ideas.

Next Meeting May 11, 2013 at Reston Library - Traveling with PH.



March 16, 2013 Guest Speakers from NIH
Monday, March 18, 2013


General Announcements.

Lila Johns is looking for guests and advisory board members for her exercise facility.

There was a PH related symosium held in Fairfax today.  We are hopeful that new PH developments will be announced.  We will let you know when we are able to schedule guest speakers.

Introduced the Trivia game.  Send us your questions! and bring in trinkets to add to the treasure bag.

Interesting websites: (hiliarious cartoons PH related) and (oxygen tote bags)

Guest Speakers from NIH:  Jason Elinoff, Bonnie Harper, Grace Graninger and Dr. Michael Solomon.

They talked about 3 new research programs.  If interested contact

1. Spironolactone study (must not already be on spironolactone)

2. Natural History Study (ph patients)

3. Blood draw Study (ph patients)

Meeting ended.




Feb 9 2013, Recognizing Our Caregivers
Thursday, March 14, 2013

Pulmonary Hypertension Support Group Meeting

February 9th 2013


General Announcements. Introduction of special guests Liz Amos and Andrea Baker.

During this meeting Janet talked about resources for caregivers and then we went around the table recognizing our caregivers and sharing information.

Thank you to the Pulmonary Hypertension Association for lunch today.

Next Meeting is scheduled for March 16th.  Location will be Miklos Systems on Eaton
Place in Fairfax.  Watch for details as we get closer to the date.  Contact
Betsie or Janet with questions. 

Locations of our meetings will vary depending on who is hosting the meeting.  It will
either be Miklos Systems or Reston Library.


Don't forget to check out the latest edition of PH Pathlight!   It is also on the PHA

Guides for COPING WITH PH:

New VIDEO Series: PH patients with other diseases.


Homework:  next month let us know if your caregiver was able to take some personal time.  Did
they do their favorite hobbie? Go out with a friend? Visit family?

Notes from PH Meeting on 10/20/12
Tuesday, January 22, 2013

(4 unread) - janetarp - Yahoo! Mail

NOVA Pulmonary Hypertension
Support Group Meeting
Saturday, October 20, 2012, 12:00pm
Miklos Systems, Fairfax, VA
Refreshments Served
Leaders: Betsie Miklos and Janet Arp
Introduction of Volunteer Services provided by the Pulmonary Hypertension Association (PHA). Presented by Debbie Castro, Director for PHA Volunteer Services. Included introductions several volunteer service employees.
Introductions of PH patients and their families. Included general discussion.
Betsie: Talked about future meetings. The group then brainstormed ideas for future topics.
Ideas for future meetings
(1) Emergency Preparation (specific to PH patients) (Accredo)
(2) Talking to Children/Adults about PH
(3) Insurance Coverage (Medicare, Social Security, Disability) (Caring Voice)
New PH Treatments/Medications
Clinical Trials
Traveling (Actellion)
Pulmonary Rehab/Exercise (G. Connors, Fairfax)
Nutrition (Whole Foods demo/Reston) (DC group did this)
Household Hints
Round table on Medications
Accessing Disability options (placards, metro passes, buses)
Mental Health
Associated Condition/Secondary Illnesses Round Table
Group Picture taken.
Attendees spent time getting to know each other.


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