Running Update:

4/26/2017	Run		9.1 mi	1:29:39
4/27/2017	Swim		1700.0 m
4/28/2017	Run		10.0 mi	1:37:09
5/3/2017	Run		7.6 mi	1:11:05
5/5/2017	Run		5.0 mi	47:56
5/6/2017	Run		12.7 mi	2:07:19
5/7/2017	Run		5.0 mi	46:53
5/8/2017	Swim		2000.0 mi
5/10/2017	Run		7.6 mi	1:10:26
5/13/2017	Run		22.3 mi	3:42:02
5/15/2017	Swim		1850.0 m
5/16/2017	Run		3.2 mi	28:08
5/17/2017	Run		5.0 mi	47:56

Only a week and a half until the Vermont City Marathon!  I’m in taper mode now.  Whew.

Jane Update:

As readers of the blog know, Jane has been participating in a clinical trial over the past three years which is proving to be groundbreaking for the treatment of plexiform neurofibromas.  The medication part of a family of drugs called MEK-inhibitors, which inhibit a specific enzyme in the cell-signaling pathway.  Because of its success, the Children’s Tumor Foundation produced an informational flyer to educate the NF community about this work.  I am pleased to say that Jane is one of the children featured in the flyer, to be released this month!

NF Update:

Every year during the month of May I post facts about NF daily on social media in honor of Neurofibromatosis Awareness Month to help fulfill the education goal of the campaign.  For those of you not on Facebook, here they are all in one place!  To read more about the events of NF Awareness Month, check out the Children’s Tumor Foundation website: http://www.ctf.org/get-involved/nf-awareness-month

1	May is Neurofibromatosis Month!
2	Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves.
3	NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body.
4	There are three forms of neurofibromatosis:  NF1, NF2, and schwannomatosis, each cause tumors to grow on nerve endings in or on the body.
5	1 in 3000 people are affected by Neurofibromatosis type 1, 1 in 25,000 are affected by NF type 2, and about 1 in 40,000 are affected by schwannomatosis.
6	NF1 and NF2 are called autosomal dominant genetic disorders. Half of all cases are inherited from a parent who has NF1 or NF2; half of all cases are not inherited but the result of a new or spontaneous mutation.
7	Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.
8	The severity and physical signs of NF1 can vary widely from patient to patient. People who have NF1 may have very few neurofibromas (tumors) or they may have thousands of them throughout their body.
9	Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities.
10	NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.
11	NF1 can result in disfigurement in a number of ways. Skin neurofibromas may develop on the face or on exposed areas of the arms or legs. The larger and deeper plexiform neurofibromas may grow around the eye or eyelid, or affect growth of one side of the face. Scoliosis, or curvature of the spine, can affect appearance when it is severe. Rarely, an overgrowth of skin or bone causes enlargement of an arm or leg.
12	Some people with NF suffer from a bony defect called tibial dysplasia, in which the leg bones are curved.
13	Another complication of NF is pseudarthrosis, in which a bone breaks, typically a long bone such as the femur, and does not fully heal, causing a "false joint".
14	People with NF are at increased risk of high blood pressure and renal artery stenosis.
15	NF can also affect the cardiovascular system causing congenital heart defects. The most common heart defects seen in NF are those affecting the heart valves, particularly the pulmonary valve.
16	Café-au-lait spots, the most common sign of NF, are the flat, pigmented spots on the skin, which are called by the French term for coffee (café) with milk (lait) because of their light tan color. In darker-skinned people, café-au-lait spots appear darker in color than surrounding skin. People with NF almost always have six or more café-au-lait spots.
17	May 17 is World NF Awareness Day.
18	5% of NF1 patients have a bone-related issue called sphenoid wing dysplasia, in which the skull and eye orbit bony areas erode away, causing possible craniofacial abnormalities, loss of the eye, and enlargement of the eye orbit cavity.
19	About 10% of people with NF will develop scoliosis, or a lateral curvature of the spine. In most cases it is mild, but more severe cases may require surgery.
20	Approximately 15% of patients with NF will develop an optic glioma with the peak age of onset between age 3-4 years old. An optic glioma is a tumor of the optic nerve in the brain which controls the vision
21	Many people with NF1 suffer from frequent headaches, particularly migraine headaches.
22	May 22 is NF2 Awareness Day.
23	The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness and severe balance problems.
24	NF2 brings on increased risk of other types of nervous system tumors as well.
25	NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.
26	NF is not the "Elephant Man's Disease," although it was at one time believed to be. Scientists now believe that Joseph Merrick, the so-called "Elephant Man," had Proteus Syndrome, an entirely different disorder.
27	The tumors in NF are usually noncancerous (benign), but in some cases these tumors become cancerous (malignant) tumors.
28	NF related malignancy is estimated to occur in 7-12% of affected individuals. People with NF are at increased risk for MPNST (malignant peripheral nerve sheath tumor), brain tumors, and leukemia, as well as several other forms of cancer.
29	NF can cause itching of the skin.
30	NF is worldwide in distribution, affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
31	The Neurofibromatoses are genetically-determined disorders which affect more than 2 million people worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined.