Wyoming Working Girl, "Fighting For The NF Cause"

2012-01-27T14:37:00.002-07:00

2012-01-17T14:36:00.003-07:00

www.orthoinfo.aaos.org/topic.cfm?topic+A00050

The web site above shows a couple of photographs of patients with caf-au-lait spots along with small nodules.

Our Son and Grandson have these markings, I wanted to show you some of the clinical symptoms.

Duane will be having some of the fibromas removed January 31, 2012. Some of the nodules can grow very large, and are extremely painful even at the touch. Click on the site address above and scroll down to the photographs.

Support Group For NF.

If you are interested in joining a support group for NF, listed is a site that I just registered with today. This has families with loved ones that have NF.
http://www.inspire.com/groups/neurofibromatosis-inc/

2012-01-16T13:22:00.001-07:00

Here they are again Folks, Father and Son, (Christopher and Duane) both have NF.
The latest update on Duane; a procedure called "Colonoscopy" has been scheduled for him on the 31st of January along with a surgical procedure to remove 4 fibromas off his back and stomach area. He will be having another skin lesion removed from his side that has black markings, have a biopsy done on that as well.
Duane is nervous about the MRI's and the CT Scan that he will be having soon. In general, he is in great spirits and is handling things very well.

Thank you for your prayers.

2012-01-09T18:29:00.000-07:00

Duane had his first Neurologist appointment January 6th of this year. It has taken so long to get on Wyoming medicaid program and then wait for the appointment, but we are so greatful for the help and Duane's neurologist seems to be very concerned for him.
Duane is to have an MRI of his brain for the Gliomas, and then on his left leg, he feels as though he has a half filled water ballon behind his knee, a CT scan for his chest, EEG for the siezures, blood work up for liver function and to have some of the skin tumors removed and biopsy done, and a colonoscopy. Duane likes this Doctor and was pleased to see how informed he was with Neurofibromatosis Disorder. This Doctor also works with pain management which Duane needed as well. His next appointment will be January 27th for the follow up after all the tests have been performed. We pray that things will be great, however, we are on the right road and if there are any problems, we will be able to head them off after we receive all information from the procedures.

2012-01-01T11:35:00.001-07:00

I was invited to listen to a "NF2 Webinar", presented by Dr.Scott Plotkin. I wanted to share this link with you. After listening to Dr.Plotkin, I made a list of several questions that will be asked at Duane's next Neurologists appointment on January 6th.

You may find that this may help your family as well.

Watch the NF2 webinar with Scott Plotkin, MD

December 042011

Posted in EducationalMeetings, Webinars

If you werenot able to attend our NF2 webinar with guest presenter Scott Plotkin, MD, youcan watch it here! You will need windows media player to view. Just clickthe link below.

WATCH WEBINAR

2012-01-01T11:17:00.001-07:00

"The Children's Tumor Foundation"

Congress awarded NeurofibromatosisResearch $12.8 million!

As we bring 2011 to a close we are happy to announce thatthe Neurofibromatosis Research Program Fiscal 2012 through the DOD Funding billincludes $12.8 million for NF research.   DONATE NOW  LEARN MORE   This awardhas been made possible through the efforts of our strong advocacy team andgrassroots support. In order to maintain this type of funding for NFresearch We Need Your Help. We ask that you considerthe NF Network in your end of the year contributions so this much needed workcan continue.

If you have any questions please call "The Children's Tumor Foundation"

1-212-344-6633

2011-12-28T19:30:00.000-07:00

This was Duane's first Christmas with us in many years. To see his smiling face, and spending quality time with each other was absoulutly wonderful.

Our Family wishes you a very Happy New Year.

God Bless.

2011-11-27T13:57:00.001-07:00

We hope that everyone had a wonderful Thanksgiving Holiday. I have a lot to be thankful for, a most wonderful family and crazy friends, and my husband who I adore. I am so thank full for our two Son's, my daughter-in-law, Duane's girlfriend of five years, Jess, and four grandson's. My siblings are precious to me as well as every one who has touched my life.

This spring, summer and fall have been ridiculously busy. Here are a few of the things that transpired this past season. Duane moved out from California in March, just as we finished the cabin for him. The move paid a toll on him, but he is doing fairly well now that he is closer to his family. Jess his girlfriend, was in California until August. My in-laws brought Jess out and stayed with us for about a week. During that time was Duane and my only fishing excretion for the summer. I had taken care of a dear friend who is 91years old, who is like a father to me. During that time, Chuck my husband went into hunting camp to help our friends. In September, I came down with pneumonia, over night. It happened so fast, that before I knew it, I was hospitalized. I am doing much better. October, hunting season, which we were successful in harvesting antelope, Elk is now on the calendar for Chuck. Duane had several medical issues that came up this season that we are slowly working on. He is in great spirits and has a wonderful outlook. He has an appointment in January 2012, with a new Neurologist in Riverton, Wyoming.

Now that the Christmas season is just around the corner, gives me thought for gifts for our families' and how we can contribute to the research in stopping the "End to the Neurofibromatosis Puzzle" all at one time. Go to our "please support " tab and you will find some gift ideas and at the same time proceeds for some items will go to the "Children's Tumor Foundation".

HO! HO! HO!

2011-02-16T13:50:00.001-07:00

Hello Folks, this is a recent picture of Duane and his son Christopher. They are such adorable young men, I couldn't resist and had to post it.
Duane has had some fairly decent days lately. I think perhaps the idea of moving to another state and being closer to his parents may have something to do with it. He and Jess his fiance' are planning on moving in the spring of this year. I pray that he feels well enough to make the long jouney.
Our grandson, Christopher is doing well as a young teenager just turning 13. He is such a joy to talk to. He and I have a special relationship. I have always called him "Bugar Butt", but now that he is turning into this young man, he has now asked if I don't call him that out in public. When it is just us, it is okay he said. Sooo, now Nana needs to be careful of what she does and says in front of him out in public. Right! As his Father and Uncle knows, Nana does what she wants. Ha Ha.
I have added several pages to our blog, I hope this helps with information of Neruofibromatosis Disorder. I want to expand more and I would welcome ideas from all. So if you have any suggestions, please comment.
I am planning on adding a nutrition page, with recipes, vitamins and believe it or not, garden ideas for growing your own special vegetable plants. We live in Wyoming, and let me tell you it is quite a challenge to grow vegetables here unless you have a greenhouse, which someday I hope to have.

Mia's Story

2011-02-11T21:44:00.001-07:00

Shawna
Mia, as well as her Daddy have Neurofibromatosis 1. Danny lived his entire life not knowing that he had it, when Mia's pediatrician noticed her birthmarks, he sent us to see a Neurologist. It was at this time that we learned that Mia and her Daddy have a very serious, but most of the time, manageable disease.

In July, Mia's right eye starting crossing inward, we took her to see her pediatrician, who immediately sent her to see a pediatric eye specialist as well as her neurologist. Everyone involved was confident that the eye issues were not related to NF based on Mia's MRI results from less than a year ago. Mia's neurologist decided that we would have another MRI just to be safe. In the mean time, Mia wears glasses to correct the eye crossing and also because they discovered that she has pretty bad vision.

Well, on Sept 9, 2008 we took Mia to CHKD for her MRI. That day at 3pm, Dr. Frank, her neurologist called us and said that he needed to see us at 8:30AM the next day. We were petrified. We will never forget that day. This is the day that we learned that Mia has two brain tumors, Optic Gliomas, one on each optic nerve, the tumor is large enough that it is going into the chiasm, which is the area that the optic nerves go through that lead to the back of the brain. These tumors occur in less than 5% of NF kids, but usually are only present on one optic nerve. Since Mia has two and they have become so large that they are in the Chiasm, Mia will be going through Chemotherapy. Mia does NOT have cancer, Thank GOD for that! But they will be treating her as though she does, since the goal is to stop the growth of the tumors. Mia had surgery on Monday (9/15) to implant a port in her chest., starting on that same day she will undergo weekly chemo for 66 weeks. The type of chemo should NOT make her sick and she shouldnt loose her hair. But the Dr made it clear that each person handles Chemo differently, so we will just have to take it a day at a time. We are all doing ok. We are still in shock that our baby has two brain tumors, but are very thankful that they are not cancer and that the chemo has an 85% success rate!

You would not know that Mia has two brain tumors...she is as happy as can be, she is so active, so smart, so caring...I could go on and on. She loves to talk on the phone, she loves her doggie, Vinny, she loves to pucker up and kiss EVERYONE! Even complete strangers. She says "thank you" and "I Sorry" in the cutest little voice. She is truly a special miracle that God sent to us. I am confident that he will take care of her.
UPDATE: Mia made it through half of her 66 week treatment when she started having side effects from the chemo, after taking a 3 week break from chemo, the Dr's decided to switch her to a more mild chemo, she is now on Vinblastine. The Vinblastine protocol is a one year treatment, so Mia will now be getting Chemo until April 2010.

Update 8/09: During her routine MRI, it was discovered that her brain tumors had started to grow. Due to this reason as well as some unanswered NF issues, her oncologist decided to send her to see a Doctor in Washington DC. He is an expert with NF brain tumors. He decided it would be best to STOP the vinblastine and start Mia on Avistan and CPT-11. Mia will be starting this on August 27th. She will be getting her MRI's every two months, they will be scanning her brain as usual but also scanning her spine from now on.
Update 6/2010
Mia has been on a chemo combo of Avastin and Ireneatekan. This combo seems to be working great for her. There has been some very minor shrinkage of the tumors, but overall stability is the goal and we seem to have found that with this chemo. Mia continues to be healthy, no hospital admits at all, she started preschool in Feb of 2010 and just recently finished up the school year. She will be starting full time preschool in the fall and is super excited to be attending the school that her daddy went to.
Mias vision continues to decrease, but we are hopeful that with tumor stability she will be able to keep her remaining vision. She functions very highly despite the dr's concerns about her vision.
http://www.caringbridge.org/visit/miarashkind/mystory
about 6 months ago

What is Neurofibromatosis Disorder?

2011-02-04T13:05:00.000-07:00

Neurfibromatosis Disorder (NF1, NF2 and Schwannomatosis) is a set of three distinct genetic disorders and NF affects 1:3000 births. Individuals with NF1 are prone to the development of benign tumors that grow on the nerves anywhere on or in the body. NF1 can also affect other tissues, including the bones, skin, blood vessels, and eyes. In addition, nearly 50% of all people with NF1 have learning disabilities. Individuals with NF2 are prone to the development of different benign tumors that grow on the nerves anywhere on or in the body (schwannomas) as well as other nervous system tumors. In addition, NF2 commonly affects hearing, vision and balance.

Individuals with Schwannomatosis are prone to the development of benign tumors that grow on nerves anywhere on or in the body (schwannomas), and tend to experience severe, sometimes debilitating pain.

Children's Tumor Foundation.

Our son, Duane Ray and grandson, Christopher Ray, have Neurofibromatosis Disorder. When we learned about Duane's disorder, he was two years old. I knew some day; that I would be raising awareness and funds for research to aid in ending Neurofibromatosis. Please join me and many others to end the NF puzzel.

Marette Nagel

Symptoms

By Mayo Clinic staff

Three distinct types of neurofibromatosis exist, each with different signs and symptoms.

Neurofibromatosis 1 (NF1) NF1 typically appears in childhood. Signs and symptoms include:

• Flat, light-brown spots on the skin. These harmless spots, also called cafe au lait (ka-FAY oh LAY) spots, are common in many people. But if you have more than six of them, it's a strong indication of NF1. With NF1, cafe au lait spots usually are present at birth or appear during the first year of life. Their number tends to increase during early childhood and then stabilize. They aren't serious but can sometimes be a cosmetic concern.

• Freckling in the armpits or groin area. This sign usually appears by 4 to 5 years of age.

• Soft bumps on or under the skin (neurofibromas). These are benign tumors that grow on nerve tissue close to your skin. Sometimes, a growth will involve multiple nerves (plexiform neurofibroma).

• Tiny bumps on the iris of your eye (Lisch nodules). It's hard to see these harmless lesions just by looking at them, but your doctor can detect them with a special instrument.

• Bone deformities. Abnormalities in the way bones grow and a deficiency in bone mineral density can cause bone deformities such as a curved spine (scoliosis) or bowed lower leg.

• Learning disabilities. Impaired intelligence (cognition) is common in children with NF1, but is usually mild. Most children are in the average or low-average range. Often, children with NF1 have a specific learning disability, such as problems with visual-spatial skills or attention-deficit/hyperactivity disorder (ADHD).

• Larger than average head size. Children with NF1 tend to have a larger brain volume, but it's unknown whether this is related to cognitive impairment.

• Short stature. Short stature is another characteristic occasionally seen in children with NF1.

Neurofibromatosis 2 (NF2).  NF2 is much less common than NF1. Signs and symptoms of NF2 usually result from the development of vestibular schwannomas (also known as acoustic neuromas) in both ears. These benign tumors grow on the nerve that carries sound and balance information from the inner ear to the brain (the eighth cranial nerve). Resulting signs and symptoms typically appear in the late teen and early adult years, and include:

• Gradual hearing loss

• Ringing in the ears

• Poor balance

In some cases, NF2 can lead to growths in other nerves of the body, including the cranial, spinal, visual (optic) and peripheral nerves. Associated signs and symptoms may include:

• Cataracts

• Numbness and weakness in the arms or legs

Schwannomatosis.  Schwannomatosis is a rare form of neurofibromatosis only recently recognized. It mostly seems to affect people in their 20s and 30s. Schwannomatosis causes tumors called schwannomas to develop on cranial, spinal and peripheral nerves, but not on the nerve that carries sound and balance information from the inner ear to the brain (the eighth cranial nerve), so it doesn't cause hearing loss, making it different from NF2. As with NF2, though, schwannomatosis doesn't cause cognitive impairment. The main symptom of schwannomatosis is:

• Chronic pain, which can occur anywhere in the body

When to see a doctor . If you notice signs or symptoms of neurofibromatosis in your child or yourself, call your doctor for an appointment or bring it up at your next visit. The tumors associated with neurofibromatosis are almost always benign and slow growing. So although it's important to obtain a timely diagnosis and monitor for complications, the situation isn't an emergency.

HAPPY NEW YEAR FOLKS!

2011-01-02T17:50:00.001-07:00

I will be updating this blog with much more information regarding NF Disorder. Please check back.

December 6, 2010

2010-12-06T14:18:00.000-07:00

Merry Christmas Everyone and thank you to our followers of the Wyoming Working Girls Blog. This blog is dedicated to those individuals who have NF1/NF2. We are sharing our Son's medical condition and life with you so you can see what we as a family go through and that you are not alone in this. We are here to help you and at any time you want to post comments please do. We check and we would love to be able to chat, email or skype regarding Neurofibromatosis Disorder.

I have personally talked with a few people who have had loved ones with this disorder or know of one or does have NF themselves. I appreciate all comments, letters and emails from you.

The next annual forum meeting for patients and families with NF is in Bloomington, MN. in July of 2011. If you would like further information please leave your comment on this blog with email address and I will forward you the information.

I was notified regarding the funding for Neurofibromatosis Disorder by The Children's Tumor Foundation, please read below.

Dear Marette,

Thank you for your past support of NF research through the Children's Tumor Foundation. We are proud of the progress we funded over the last 25 years - including discovery of the genes that cause NF, mouse models and cell lines to test promising compounds, and recently pilot clinical trials that are taking NF research from the lab to the FDA.

However, we fully recognize that these accomplishments would not have been possible without federal funding for NF research, both through NIH, and more importantly through the Congressionally Directed Medical Research Program NF Research Program (CDMRP-NFRP). A recent update on the legislative process and history of this program can be read at http://www.ctf.org/How-You-Can-Help/advocacy.html

This program is funded through the defense appropriations bill as part of our military's healthcare program. The House completed their work on the bill over the summer and we expect that their bill included the $20 million requested for FY2011. The Senate is currently working on their version of the defense appropriations bill, and we expect a conference committee composed of House and Senate members to meet quickly to work out the differences in the two versions and pass a joint bill.

We are writing to ask you to email your Senators as soon as possible seeking their support to include $20 million of funding for the CDMRP-NFRP in FY 2011. This program has been vital to the advances we have seen in NF research, and its continued funding is critical in our drive to translate the progress made in the lab to actual FDA approved treatments for NF. You can reach your Senators by visiting http://www.senate.gov/ and clicking on "Find your Senators" in the upper right corner of the site.

While all outreach is important, if you live in AL, CA, NH, IL, KS, KY, MS, MO, OH, PA, TX, UT, VT, WA, or WI your voice is particularly important. The Senators in these states (listed below) are members of the defense subcommittee of the appropriations committee which ultimately determines the success or failure of this program.

It is important to note that this funding is not an earmark - it has been in existence since 1996 and none of the funding is directed to any particular company or institution until after going through a strict, two-tier peer review process.

Please join us in taking the time to email both of your Senators now to help preserve this vital program. Thank you for all you do for our shared cause of ending NF through research.

Sincerely yours,

George T. Orfanakos and John W. Risner

Children's Tumor Foundation

Ending Neurofibromatosis Through Research

95 Pine St. 16^th Floor

NY NY 10005

212.344.6633 x249

https://ui.constantcontact.com/rnavmap/em/ecampaign/www.ctf.org

PS- In addition to any personal stories you would like to add to emphasize the vital importance of this program, here is some suggested text:

I am writing to ask for your support for $20 million of funding for the Congressionally Directed Medical Research Program- NF Research Program (CDMRP-NFRP). This program has been funded through theDepartment of Defense since 1996 and has been vital to the advances made in NF research. Critical work in nerve regeneration, brain and spinal trauma and pain management has led to important advances in research, and it is the current clinical trials consortium, funded through this program, that offers promise of actual treatments in the very near future.

As the Senate considers the appropriations bill for FY2011 I hope you will support the $20 million requested for the CDMRP-NFRP. Thank you.

Senators on the Appropriations Committee - Defense Subcommittee.

Republican Subcommittee Members

Folks, I wrote to our Senators and Congress with my story and plea for funding of

Neurofibromatosis Disorder.

If you would like to do the same, please check your states Senators and

Congress address's and send letters for support for funding for research of this DISORDER.

2010-10-25T15:28:00.000-06:00

Fall is here and winter is just around the corner. I hope you had a great and prosperous summer and now with fall here, I hope things are beginning to slow down for us all. We had a busy summer and it was great. Duane and his fiance' Jessica visited with us for 3 weeks and our older son Christopher came for a week to be with us and his brother.

When Duane first arrived, he needed help with support to walk through the airport, Jess was feeling nausea, the landing of the plane was not very respectable by all means and she looked a bit green. Poor thing I can relate, I hate to fly. Duane had what I call "the lizard tongue" episode the first night home and it lasted over an hour. He had to go to bed due to a sever headache followed the attack. He couldn't speak to us but gave us hand gestures saying things were okay. I was very sadden to see our son go through this misery.

He had a total of 4 of those episodes while he was here. I do believe he had several seizures during the first part of his vacation. I did not witness them, Jess said that he had them early in the morning. However, his balance was way off and I held hands with him as he walked anywhere until he felt that the cane could support his weight. He ate very little. But I noticed after a few days that his appetite increased as more time went by. I was thrilled to cook for him and see his hunger increase. I watched what I would provide for food, I didn't want to feed my family junk even if we had our son's here on vacation, we have a tendency to splurge. Not this time though. Fruits and vegetables and some meats.

Having our son's here together was a joyful time for us. We love them so very much. And to have a new daughter in law in the near future is a added bonus. She is a wonderful, caring and lovable woman.

Duane is following in his mothers footsteps with photography. He has some wonderful photographs that I would like to share with you. He donates part of the proceeds to the "Children's Tumor Foundation". If you see an image that you would like, please in the comment area leave us your email address and we will contact you with size and fee. We appreciate this very much.

Once again we are back to raising funds for the research of NF Disorder. Please read the entry below and click on the face-book address or google Neurofibromatosis, Inc. (go to advocacy to follow the instructions to write to your representatives and senators. They have a letter already for you to print out, just fill in the blanks for your signature and who your addressing the letters too. I have sent our letters and I hope you will too.

Neurofibromatosis, Inc. The $20 million dollar request for the Army's NF Research Program is now in

conference. Your help is needed to make this NF Research funding a reality. Please visit NF, Inc. Network to inform your Representatives of the importance of federally funded NF Research, urging them to make neurofibromatosis research a nationa...

http://www.facebook.com/l/e3a99CTM55azk__PYPDXBCHKFow;nfnetwork.org/ge

These 8 x 10 photographs by Duane Marshall, $15.00 each.

There is nothing more important then family!

Thank you for reading our blog.

2010-07-17T14:50:00.000-06:00

Hello Folks, it has been sometime since I have written on the blog and I apologize for this. Some things have taken up our time as of lately, such as closing our Saddle Shop and the sell of our building, but now I will have more time to dedicate to the Children's Tumor Foundation and my family.
My goal is to increase from last years goal by $5000.00 for this year. I will need every one to help us with this cause. The monies go to research for the disorder of Neurofibromatosis.
So please help us to reach our goal this year by sending a check to me, MAKE IT out to the "Children's Tumor Foundation". I will be adding names to my list of supporters and then forward the monies to Kelly Mills at the Foundation in Los Angeles, California. Thank you in advance Folks.

Duane has been keeping great spirits and is loving life to its fullest. He has his good days and bad with the disorder. But he tells me "Its all good Mom" then he says " I love you Man" (that is our secret code to each other that things are okay and for me not to worry). Bless his heart. When he was 15 years old, the Doctor thought he had a growth on the nerve to the right ear, and he was to have a MRI with die injection. When we came out of the office and Duane and I were walking through the parking lot, he turns to me and said, "Mom it is going to be just fine", of course he was reading my mind and at that moment I broke down and cried. I couldn't believe how positive he was at that time and he carries the same attitude now. I love him so much.

We are proud to announce Duane and his girlfriend Jessica are engaged to be married in May of next year. She has been at his side the past 4 1/2 years and has seen how Duane has progressively gotten worse due to the Neurofibromatosis Disorder. She has been there for him and has assisted him through so much, not with just her love and support but with her friendship and her laughter. She is an exceptional young woman and we are so very very happy to have her as part of our family. (I love you most Jess).

Please help the "Children's Tumor Foundation" with a check of any amount. ($1.00 helps too).

Thank you very much.
Marette Nagel

2010-05-20T07:39:00.000-06:00

Night before last, Duane was rushed to emergency with symptoms of a heart attack. After many tests, that was ruled out. There is a possibility that a fibroma may be the culprit. Doctor seems to think that there is a growth near his heart wall and that perhaps it shifted. He was put on morphine and was in stable condition four hours after arriving at the hospital. He was released with notice to contact his personal Doctor to follow up with another MRI or CT scan. He has had two issues with the heart as of lately.
This disorder has progressed so fast in the last year that it is overwhelming.

GOD BLESS MY CHILD.

2010-04-28T13:25:00.000-06:00

After speaking with Duane, I felt extremely helpless. He has been having stomach problems, more specific, keeping food down. He is feeling weak and sleeps a lot lately. His headaches seem to be more chronic. His spirits are high and he tells me "all is good Mom".

True Life | I Have NF

2010-04-17T12:58:00.000-06:00

True Life | I Have NF: "Follow the lives of three young individuals who fight against a disease that causes tumors to spread through the body."

2010-04-10T15:36:00.000-06:00

Duane is doing much better. His Doctor doubled the dose of his seizure medication after checking the results of his blood test for any liver problems. He hasn't had a seizure for about two weeks now, and he is feeling a little better about getting out and away from the house.

He will be seeing a cardiologist next week per his doctor. Precautionary.

March 20, 2010

2010-03-20T12:54:00.000-06:00

Duane is having more seizures as each day progress's. His seizure medication cannot be increased to fast so the Doctor is increasing it slowly as not to cause any other problems. However, they are more frequent now. He is going to have blood tests done per his Doctor, thinking perhaps there is something else happening and she wants to make no assumptions. I will let you know what the out come is as soon as I hear. Duane is in great spirits and he tells me "It is all good Mom, don't you worry".

This is all very new to me, so lets give it a try.

2010-02-10T15:56:00.000-07:00

Hello Folks, this is my first post ever. I wanted to start a blog so I may write every day with comments, stories and helpful information that may be used by all at one time or another.
A little about me first, I am a professional photographer who loves to garden and where I live (wyoming) it is an experimental process continually. Along with my husband Chuck we own Saddle Tramps Saddlery in Dubois, Wyoming. My husband is a saddle maker and makes beautiful mountain and ranch working saddles. We also have Morgan horses and just recently Chuck fulfilled his life long passion, driving horses. We now have a wagon that is pulled by two Halflingers. Hank and Max.
I have built a website www. Saddletrampsdubois.com. It also is my first website. However I am learning on how to make it more successful. Any help is much appreciated. The photography that I do is mainly western style prints. They are shown in our shop as well. I have found that I love to do action photography such as our local Pack Horse Race held in May. Action shots are wonderful and you never really know what your going to end up with until the end of the day. I have produced several slide show dvds, with great success selling to the public after the events.
I am involved with the Children's Tumor Foundation in raising funds for research for Neurofibromatosis Disorder. We have a son and grandson afflicted with NF. Our son is in his 30's and went from a healthy young strong man to a very sick person overnight. Our grandson, his son, has a mild case as did our son when he was born. Our grandson is doing well and our son is under management by his doctor. One day I will post our story about Neurofibromatosis Disorder.
It is winter now and the wind in Wyoming is blowing full force. I will be writing more in the next few days and posting information for gardening in Wyoming, horse related articles and information as well as information regarding NF.
Thank you for reading my first blog.