Next Step Service Dogs

Next Step Service Dogs trains dogs to be a psychiatric service dogs.

Standard service dog tasks include getting help, turning on lights, balance support, and retrieval [to name a few].

Read More: https://www.nextstepservicedogs.org/about/

ADDITIONAL CONTACT INFO

http://www.nextstepservicedogs.org

nextstepservicedogs

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About

Bringing peace to the lives of our heroes by providing service dogs for veterans and first responders with PTSD and TBI.
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General Information

support@nextstepservicedogs.org

Next Step West Coast Chapter
Ph 760-438-9190
FAX 888-867-1690

PTSD Awareness Month

June Is PTSD Awareness Month

The VA's crisis helpline is 800-273-8255, or via text at 838255.

You don't have to be teetering on the edge to contact them. Sometimes it just helps to talk to somebody who has been in a similar situation and gotten through it, you can get through it too, sometimes all it takes is talking about it. 

And if you do think you have PTSD, don't believe all the horror stories about the bad treatment at the VA and let that keep you from contacting them for help. There are a lot more success stories than bad ones.

You can check out our PTSD section for a bunch of articles that can help too.https://www.military.com/benefits/veterans-health-care/ptsd

The VA's National Center for PTSD has more available, click here

June is PTSD Awareness Month. Help raise awareness of PTSD and its effective treatments by sharing this post! To discover ways to connect and share, visit the National Center for PTSD website: www.ptsd.va.gov. Promotional materials are available to help you distribute information to your community or organize an event. www.ptsd.va.gov/about/ptsd-awareness/index.asp

More information:

https://www.ptsd.va.gov/about/ptsd-awareness/ptsd_awareness_month.asp 

Colin's Condition - NIH Trials inpatient

Adding the experimental medication as well as the antiviral

Journal entry by Laura Benson — Jun 9, 2018

Colin has had a rough week.  Last weekend NIH gave Colin water pills to remove fluid around his heart.  He lost a lot of water and became severely dehydrated.  This took his very high blood pressure and brought it far too low.  Since he already has kidney injury from last year at the onset of his condition, this only made matters worse.  So the team of doctors spent the entire week getting his kidneys functioning and his blood pressure balanced with IV Fluids and medications (although blood pressure is slightly stable, it is still high).  Only then were they willing to finally let him take his experimental medication:  Tofacitinib.

He took his first dose of Tofacitinib on Thursday.  He had to wait ten days!!
Doctors continue to monitor his creatinine levels and also are attempting to taper his cyclosporine dose, slightly.  (Cyclosporine is known for causing high blood pressure and kidney problems.  Colin has been on it for over 12 months).   
He is now taking Tofacitinib twice a day.

Today the doctors introduced Ganciclovir, an antiviral. It is used to treat infections caused by viruses.  
Colin has a reactivation of HHV6, which is something we all had when we were babies.  There are known medical studies following patients that have a reactivation of HHV6 with drug hypersensitivity (DIHS).  Colin has been tested for HHV6 many times this last year.  Occasionally it shows up in blood tests, but has not been consistent.  So, the NIH doctors would like to treat it while he is being closely monitored.  He continues to donate his blood for testing that is used in this type of research.  

All of the medicine that Colin has been taking for the past year are immune suppressants (Prednisone, Cyclosporine and CellCept and now Tofacitinib). All of the strong medications that he takes to attempt to control his flairs and relapses have a lot of side effects that are very concerning.  And if you've been following him - you know that he has had many break through flairs and relapses, which is disheartening.  As you can imagine, he is getting weak and tired from fighting whatever "this" is.  And as many of you have experienced yourselves, all of the medicine that Colin takes causes side effects that also must be treated. 

Thank you all for your prayers because we know God is listening. 

We have had the best doctors examine and treat Colin.  Walter Reed, John's Hopkins Center, Washington Hospital Center, Mayo Clinic and NIH and many others have been consulted from various other hospitals.  They genuinely care and are working hard at learning more about Colin's condition and why his own immune system won't kick in and fight for him.  

Colin's Condition - June 1, 2017

June 1st

Journal entry by Colin and Laura Benson — Jun 1, 2017

Colin started the day with more energy and a very positive attitude!
Last nights IVIG took over 7 1/2 hours!

He had a busy day-all day long, non stop.
Doctors, physical therapy, more ointment and wrapping him up like a mummy and a loud annoying roommate as well as his last round of IVIg tonight. 

We got a call about coordinating housing for him after he is discharged, but that won't be for at least another week to ten days. I will share that when we have worked out the details. (Housing him in the Wounded Warrior Barracks at Walter Reed National Medical Military center).

The doctors shared their conference feedback. 

Many doctors reviewed Colin's case and the feedback is:
The bad news is they still don't know what is wrong with him!!!

According to his doctor today: The good news is that they know many things that are not wrong with him. (She said that to make light of all of the many hundreds of tests and labs he has had the past two months!)

They seriously don't know what else to do other than "wait and see" and respond to his flair ups when he cycles and treat him symptomatically. 

He may have a case of prolonged DRESS with overlapping TEN. 

I hate leaving Colin at the hospital at night. I stayed most nights with him at Walter Reed 
While he is undergoing this treatment he needs to be resting. Meanwhile his roommate gets hauled away for his behavior and another one moved in and is immediately put in restraints. He is definitely in an urban hospital. 

I pray he is safe and stays strong and positive despite his circumstances and his environment. 

My parents drove all the way from Florida to Washington DC today and arrived around 1900. I will post a photo of them below. They were so glad to see Colin with their own eyes. 

And for me - it was so wonderful to hug my parents!

Colin's Condition - NIH Medical Trials

NIH Medical Trials

Journal entry by Laura Benson — May 28, 2018

Thank you for following Colin's story.  
We are writing this post the evening prior to admitting him into the hospital just a short distance across the street (writing this from Walter Reed) to the National Institutes of Health (NIH). 

Colin has been a Research Patient at NIH for many months.  NIH doctors have discovered many interesting remarkable things about Colin; how his body responds to chronic inflammation and what possible medication may be available to help control or stop his relapses.  We first brought Colin to NIH last November 2017 when he was viewed at Grand Rounds (over 70+ doctors examined Colin).  One of the Dermatologists at NIH viewed him and wanted to place Colin into a research study on DRESS/DIHS syndrome.

DRESS/DIHS syndrome should only last 2-8 weeks.  So, why has Colin been severely ill and in pain and unable to pull out of "this" for 14 months?!  The doctors don't all agree on the diagnosis.  After all, this is a diagnosis of exclusion (which means that doctors only know what he doesn't have.  They continue to test his blood and skin often to look for any answers to come up.  He has been tested for so many conditions and nothing makes sense). Some even suggest he may have a rare autoimmune disease. 

If you have been reading his updates, you will know that we have taken him to Mayo Clinic in Rochester, Minnesota (twice) for Second Opinions from several doctors.  Mayo helped discover one of Colin's gene mutations, which help doctors and pharmacists identify how he metabolizes medications and which to avoid.  Additionally, Colin also continues to have a severe skin flares and reactivation of a specific virus (HHV6) that comes and goes.  It is picked up in certain blood tests.  Not enough information is available on DIHS/DRESS Syndrome is available yet. However, the condition he suffers from doesn't only affect skin, but also affects organs.  All doctors are very concerned not only for damage to his organs from his condition, but also from the side effects of taking high doses of steroids and immune suppression medicines.  
We have been cautioned and warned for over a year about his immune system and he has been very lucky; however, they are going to begin an experimental medication on Colin at NIH...Before he agreed to do this...

Colin was granted convalescent leave to visit Florida where we celebrated some very important family milestones.  Colin's father (Randy) is also here helping manage Colin's care with me (Laura).  I was able to attend a caregivers retreat with Semper Fi Fund in San Antonio, TX and our daughters (Alexandra and Cassandra) drove up from Florida with our puppies (Wesley and Buttercup) to spend a week with Colin visiting before his admission back into the hospital.

Colin was able to participate in Walter Reed "field trips" to Rolling Thunder and later that day a tour of The US Capitol and front row seats to the National Memorial Day Capitol Concert.  It was an emotional day reflecting on our military's heroes and their sacrifice to our country and our freedom.

We were so grateful to have these moments, because now things are going to get more intense and many more prayers are going to be sent.  And we are asking for your prayers as well, please.  

NIH, Mayo and Walter Reed are all working together to help him.  His condition is very complicated, and he is very Atypical. So far Colin has only been a research patient, until now he will be an actual patient and admitted into the hospital at NIH.  The reason for his admission is so that doctors at NIH will have a controlled environment to protect him from opportunistic severe infections.  This is a real threat and one that the doctors are not taking lightly.  Colin basically has no immune system and even a cold could harm him significantly. 

NIH discovered that Colin has a mutated JAK/STAT pathway.  NIH and Pfizer discovered a medication "Tofacitinib" which has a generic name Xeljanz that is used primarily on Rheumatoid Arthritis, which targets the JAK/STAT pathway. It has never been used on someone with Colin's condition before.  So he is Patient #1 in the research on the uses of this medication. If you Google Xeljanz you will see a black box warning.  

Here is the link: https://www.xeljanz.com/ 

The plan for now is for Randy and I to stay in Colin's room on base at Walter Reed National Military Medical Center.  Thankfully we can easily walk across the Navy base and cross the street to visit Colin while he is at NIH for the next 1-2 weeks.  The hospital will give us permission to visit him and he may even receive a "Day Pass" to take short breaks away from NIH to attend his normally scheduled doctor appointments at Walter Reed.  Keep in mind that NIH is NOT a normal/typical hospital.  It is a research facility with a hospital for their research patients.  (Very different than what most people would imagine).

We will continue to update you on his condition and thank you in advance for your prayers. 

Frank Boffi

I had the pleasure of knowing Frank Boffi personally.  Frank knows a lot of people, so I feel very honored to have known him for twelve years.

Below you will see a few precious photos that I have collected of my favorite WWII Hero, Frank Boffi.  Frank is Purple Heart recipient and survivor of an attack by Japanese forces during WWII aboard the USS Hugh W. Hadley (DD-774) 

Frank's military career stories as well as photos of our family with him are shared below.
We also had the honor spending time with his wife, Stella and even attended church services together.  They are both greatly missed and are together again in heaven.  I'm sure Frank is up there now, telling stories and smiling down on us.

Frank stopped by my office regularly for morning coffee, hugs and time to chat.  I enjoyed those precious moments with him and considered him to be a very close friend.

Our daughter, Alexandra accompanied us at the Moose Lodge for breakfast; one of Frank's favorite local spots

Frank and I took a "selfie" with a friend of his at the Moose Lodge 

Carla and I smooching Frank in 2014.  

He loved the attention and it was fun giving it to him.

Our daughter Cassandra and I visiting with Frank at his Nursing Home, Easter 2015

My husband, Colin and I with Frank at his Nursing Home, Easter 2015

Frank and I at the Navy Ball October 2011

Frank and I at the Navy Ball October 2012

Frank and I at his 90th Birthday Party in May 2012

Our daughter, Alexandra with Frank and other NJROTC Cadets from Boone High School,  September 2011

Frank and I in September 2011 at one of our many Lone Sailor Memorial Fundraising and Awareness Events

Frank Boffi (far left) unknown, Me and Captain Andy Mohler, USN (Ret.) at the
Glenhaven Memorial Park for a Memorial Day Event May 2006

The Chief Petty Officers Association of the Naval Air Warfare Center Training Systems Division (NAWCTSD) located aboard Naval Support Activity Orlando welcomed World War II Veteran, Frank Boffi into their mess as an honorary member on May 17th one day before his 90th birthday. [read more]

My husband, SCPO Colin Benson had the honor of serving at the Naval Air Warfare Center Training Systems Division - (NAWCTSD) during the time that the Frank Boffi Welcome Center was dedicated.  November 10, 2014.

Frank Boffi Room Unveiling Ceremony November 10, 2014
Video Link: Click Here

Naval History regarding his WWII time served on the USS Hadley: Click Here 
https://navy.togetherweserved.com/usn/voices/2010/29/Boffi_voices.html

ORAL HISTORY OF FRANK V. BOFFI -Link to RICHES of Central Florida
https://richesmi.cah.ucf.edu/omeka/items/show/4758 

Rolling Thunder Washington, DC2018 Run Info

2018 Run Info

Shared from: https://www.rollingthunderrun.com/2018-run-info/ 
Facebook:  https://www.facebook.com/RollingThunderDC/ 

Rolling Thunder Washington, DC2018 Run Info
Rolling Thunder XXXI



Schedule of Events
Friday, May 25

5 PM - Washington National Cathedral - 'Blessing of the Bikes'

9 PM - Candle Light Vigil at the Vietnam Veterans Memorial

Saturday, May 26

9 AM- 9 PM Thunder Alley The official vendor site for Rolling Thunder XXXI is on 22nd Street and Constitution Avenue Northwest. Official Rolling Thunder patches, pins and T-shirts are on sale in Thunder Alley, along with food and biker related goods.

Sunday, May 27

6 AM - Reveille - Vietnam Veterans Memorial - Wake-up call for all riders taking part in the Rolling Thunder XXXI First Amendment Demonstration Run. Bikers rally in the North and South Pentagon parking lots at 7 AM for a noon departure.

9 AM - Thunder Alley Opens: Location: 22nd and Constitution Ave NW

12 PM - Rolling Thunder XXXI First Amendment Demonstration Run

First Amendment Demonstration Run - Bikes leave the North Pentagon parking lot to begin their run through the Mall area. After the run, police will direct riders to West Potomac Park, where they will pay tribute to their fallen brothers and sisters.

1:30 PM - Rolling Thunder Speakers Program (Lincoln Memorial)

3 PM - Musical tribute to Veterans - TBA

8 PM - Memorial Day Concert - at the Capitol.

Monday, May 28 - Memorial Day

9 AM - 5 PM - Thunder Alley is Open at 22nd and Constitution Ave

9 AM - WWII Memorial Wreath Laying Ceremony

11 AM - Wreath Laying Ceremony - Tomb of the Unknown Soldier, Arlington National Cemetery.

1 PM - Vietnam Veterans Wreath laying ceremony

2 PM - Annual Memorial Day Observance at Vietnam Veterans Memorial - Honoring the fallen service men and women of the Vietnam War.

2 PM - National Memorial Day Parade - Marching bands and veterans' units from all 50 states. Begins at the corner of Constitution Avenue and Seventh Street Northwest.

3 PM - National Moment of Remembrance