Provide Relief to Huntington’s Disease Families

Author: Sarah Parker Foster – Senior Regional Advocate of WeHaveAFace.org Inc.

Many HD families struggle financially, as if having HD wasn’t bad enough. Certainly most of us have wondered, at one time or another, why more programs don’t exist specifically to address this most basic of needs.

For many years, Wilderness Kids Firewood has donated money to a relief fund. Then Help 4 HD International, the non-profit who administers that relief fund, has delivered that money to families with HD who desperately needed it.

Wilderness Kids has a proven, time tested business model of buying firewood at just the right price and selling it, for less than competitors, at grocery and convenience stores in its county, where the wood is quickly purchased. This enables Kids to donate $1000 to the relief fund each year. Twice each year, recipients are chosen by drawing from a submitted pool of families in need.

You’ll find links at the end of this entry describing the history and mission of the Wilderness Kids Firewood project, and you can learn all about the kids’ involvement.

But that’s not what I want to talk about.

I want point out ways we can help HD families in need without reinventing the wheel. Mike Fernald, the man facilitating Wilderness Kids, firmly believes that this firewood project “belongs” to the entire HD community, because everyone can benefit from it. Since it has the potential to help so many more people per year, why not help make this wheel bigger?

It will take more than just this one, very remarkable and dedicated person to grow the firewood business which funds the relief fund. But you can help in plenty of ways without going to Maine or becoming a woodsman.

Fernald is capable of successfully expanding Wilderness Kids throughout the state of Maine with the help of many financial backers on a small scale. With one or more partnerships, Fernald could afford to purchase the equipment and mass produce Kids wood products. If you or someone you know is in a position of abundance, contact Mike Fernald and see how you can help the Kids business grow so that greater financial help will reach more families each year, from a source that will keep chugging along as long as HD does.

Maybe you don’t quite fall into the abundance category, but you still want to make a big difference. Remember that it takes more than one person to run a business. Contact Mike Fernald to see how you can help him out. A lot of the help he needs doesn’t cost very much, if anything. You could help design a fresh logo or provide some printed material for the company. Or put your accounting skills to work by making some spreadsheets or helping prepare tax returns for the business. You can also broadcast what Wilderness Kids is doing by advocating and writing letters on its behalf. And you can tap into your creativity by helping Kids advertise.

So decide what you’ll do to help sustain the Wilderness Kids Firewood project, or how you’ll be able to make it grow. Families involved with this project on a large or small scale, or to whatever extent they are able, will sleep well knowing they’ve helped more HD patients and families on a personal level.

Wilderness Kids has been providing financial support for HD families for many years. Help 4 HD International does a commendable job of helping to get the word out and of ensuring the proper distribution of the funds.

Don’t you think it’s time we step forward and help?

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Contact Mike Fernald at WildernessKidsFirewood@gmail.com or (207) 229-8240
Read the Mission Statement at http://www.help4hd-international.org/files/Help_4_HD_-WKFW_Mission.pdf
If you have a financial need and live in the US, enter for the drawing athttp://www.help4hd-international.org/drawing.html
Donate to the relief fund at http://www.help4hd-international.org/drawing.html

Or:

Wilderness Kid’s Firewood Project relief fund
436 Playa Blanca
Santa Maria, CA 93455
*In the note section of your check specify: “Wilderness Kids Drawing”
Wilderness Kids Firewood – “Help4HD Relief Fund” https://www.facebook.com/pages/Wilderness-Kids-Firewood-Help4HD-Relief-Fund/376669769060492

Learn more about Help 4 HD International at http://www.help4hd-international.org/

Depression and Seasonal Changes with Huntington's Disease

Author: James Valvano – Founder/President of WeHaveAFace.org Inc.

Just recently an individual within the HD community emailed me with a very interesting question. "Dear James - I was wondering if you can give me some advice on this. Does the seasons [from summer to fall and winter] have something to do with depression and changes in someone with Huntington's disease?"

This is a great question. Although I am not a medical professional, I took some time to investigate this, and here is an overview. First, what do we know about Huntington’s disease?

As per the Mayo Clinic, "The most common psychiatric disorder associated with Huntington's disease is depression. This isn't simply a reaction to receiving a diagnosis of Huntington's disease. Instead, depression appears to occur because of injury to the brain and subsequent changes in brain function.”

As per HOPES (Huntington’s Outreach Project for Education, at Stanford), “Interestingly, serotonin stimulates the expression of BDNF, and BDNF enhances the growth and survival of neurons that release serotonin. Because Huntington’s patients have decreased levels of both BDNF and serotonin, this interaction could play an important role in the pathogenesis of HD.”

Dr. LaVonne Goodman writes, “Why do HD patients get psychiatric symptoms? Of course part of the reason is reactional, we're depressed and anxious because we feel sadness and fear. But the most significant reason for psychiatric symptoms is the disease itself. The HD mutation directly causes disruption of nerve circuits in parts of the brain that control emotions. The serotonin system is one of the most important systems for maintaining emotional and nerve cell health.” [HDDrugWorks.org]

So, do seasonal changes potentially exacerbate depression in a person with Huntington’s disease?

Many of us feel better, happier, and more energetic when the sun is shining and we are more active. On less brighter, more melancholy, weather-ridden days, we tend to feel the opposite. With Daylight Saving Time [fall ahead], this change shortens the time in which our bodies are exposed to sunlight. We rely on sunlight for our bodies to create the nutrient - Vitamin D, which plays a role in depression. Inasmuch, sunlight may have an affect on the level of melatonin, causing us to be lethargic and bringing on the need for sleep. For many individuals (with or without Huntington’s disease), this time of year affects our sleeping and waking time. We have to “reset” our body’s biological clock (circadian rhythm) and allow the change to take place. Concerning individuals with Huntington’s disease, it is known that we battle with serotonin and dopamine levels, so we need to be proactive with our overall health, regardless of the season. I know it is easier said, than done. To help individuals in our community, many medical professional have prescribed Serotonin reuptake inhibitor drugs [SSRIs] treat depression and many other symptoms of Huntington's disease. During these seasonal changes, it is very important to remain steadfast with these prescribed medications, and contact your physician if “seasonal” changes affect you. Always seek medical attention if you become more depressed or show additional signs of depression!

What can you do to fight the blues?
BDNF: (Brain - derived neurotrophic factor) is a protein related to the "Nerve Growth Factor" (NGF) found in the brain. The BDNF helps to keep existing neurons "alive" and to help the growth of new neurons and synapses. They are found in vital areas of the brain (specifically pertaining to the striatum in Huntington's disease) for learning, memory, and thinking. BDNF is a major factor in the development and progress of Huntington's, because BDNF sustains the striatum of the brain, which is the brain area most affected in HD. Numerous animal studies have shown specifically that raising BDNF levels can protect the brain - particularly the striatum in HD mouse models. The new research suggests that actively increasing BDNF levels is likely to slow the development of Huntington's symptoms, as well as protect the brain. The promising new findings about BDNF can be exploited even today. They are easy, cheap, reasonably safe ways for people to increase BDNF levels in the brain. Exercise, maintaining a reasonably low weight, and enjoying a stimulating, but not overly stressful social and mental life, all raise BDNF levels. During the seasons, enjoy hobbies, communicate more with your family and peers (support groups), and keep yourself occupied! Be sure to take as much time for yourself. Get as much sunshine and remain active. This will ultimately result in a much needed boost to your immune system and help put a smile on your face!

Change is not always easy. Personally, the changes in season [from warmer weather to colder weather] has a great affect on me. Even in Florida, the slightest change is difficult for me to overcome. However, I continue to adhere to the medication regimen prescribed by my doctor, and try to remain as active as possible. I wish to thank you for writing me and for bringing about some very important topics! Please feel free to share your comments below. You are loved!
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