LIVING IN HOPE

Steps that are countable, responsible and one that makes a difference ...
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Today's Bird of the Day (#BOTD) is the Black and White Casqued Hornbill (Bycanistes cylindricus) and also commonly known to many as the Grey-Cheeked Hornbill

It is a long black and white hornbill (approx 28 inch) with a large oversized blackish bill and a large casque on top and that is how the name defines it. The female hornbill is slightly larger than the male. 
They are a very monogamous bird so you will find pairs nesting on suitable tree cavities. 
  
Found mainly in wooded habitats in central and western Africa, ranging from west Kenya to Côte d'Ivoire with an isolated population in north Angola.

Like most hornbill species, their diet mainly consists of figs, fruit, insects and small animals found in trees. 

The IUCN Red-List of Threatened Species accesses this bird as found commonly and widespread so have given them a Least Concern IUCN Conservation Status.  

Male Black-and-white-casqued Hornbill (Bycanistes cylindricus)


Via Flickr and notes from the photographer Steve Garvie 


"In Kenya these large forest hornbills are birds of the western forests being replaced by the Silvery-cheeked Hornbill in central and eastern Kenya. They are common in Kakamega forest but can be a challenge to photograph as they are shy & tend to keep within canopy cover where they betray their presence by their noisy whooshing flight".


Location: Rondo Retreat, Kakamega, Kenya (Africa). 


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Have your say ? Why don't you leave us a comment to say what you feel about our Bird of the Day (#BOTD) Series ? 

In celebration of Republic day, Felis Films brings to you a unique assemblage of footage from across Wild India.

This video is a tribute to the little-known citizens of India, who also share the same National Anthem as all Indian's do. Jai Hind!

Image result for wild india jana gana mana

Credits: Director - Sandesh Kadur Editor - Chinmay Rane
Music - Jana Gana Mana - Bharat Bala Productions, Indian Army.
A film by Felis Films. www.felis.in




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Jana Gana Mana Lyrics

Jana-Gana-Mana-Adhinayaka, Jaya He
Bharata-Bhagya-Vidhata
Punjab-Sindhu-Gujarata-Maratha Vindhya-Himachala-Yamuna-Ganga
Tava Subha Name Jage Tava Subha Ashisa Mage
Gahe Tava Jaya Gatha.
Bharata-Bhagya-Vidhata,


Dravida-Utkala-Banga
Uchchhala-Jaladhi Taranga
Jana-Gana-Mangala Dayaka, Jaya He



"Jana Gana Mana " is the national anthem of India. Written in highly Sanskritised (Tatsama) Bengali, it is the first of five stanzas of a Brahmo hymn composed and scored by Nobel laureate Rabindranath Tagore. It was first sung in Calcutta Session of the Indian National Congress on 27 December 1911.

"Jana Gana Mana" was officially adopted by the Constituent Assembly as the Indian national anthem on 24 January 1950. 27 December 2011 marked the completion of 100 years of Jana Gana Mana since it was sung for the first time.

Jaya He, Jaya He, Jaya He, Jaya Jaya Jaya, Jaya He

The original poem written by Rabindranath Tagore was translated into Hindi by Abid Ali. The original Hindi version of the song Jana Gana Mana, translated by Ali and based on the poem by Tagore, was a little different. It was "Sukh Chain Ki Barkha Barase, Bharat Bhagya Hai Jaga....". Jana Gana Mana was officially adopted by the Constituent Assembly as the Indian national anthem on 24 January 1950.

A formal rendition of the national anthem takes fifty-two seconds. A shortened version consisting of the first and last lines (and taking about 20 seconds to play) is also staged occasionally.Tagore wrote down the English translation of the song and along with Margaret Cousins (an expert in European music and wife of Irish poet James Cousins), set down the notation at Madanapalle in Andhra Pradesh, which is followed only when the song is sung in the original slow rendition style of singing. However, when the National Anthem version of the song is sung, it is done in the traditional grandiose Martial Style of music.

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We want to thank our wonderful family, friends and friends of friends for your amazing response and kind donations and messages. We are overwhelmed and so very grateful.

The latest update from AAV gene therapy committee last week: As a result of fundraising efforts, there is approx. $250,000-300,000 to fund the April step of the Project.
We are that bit closer to the $500,000 target.
Every £1/$1 counts.

Thank you SO much for your donations! 

Please keep sharing.

JustGiving - Sponsor me now!





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Updates statement from 3 AHC Charities (Alternating Hemiplegia of Childhood Foundation, Cure AHC and Hope for Annebel) 


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As we pass the six month milestone for the AAV Project, we wanted to provide the AHC community with a brief update and some clarity about next steps. Since June 2018, Cure AHC, AHC Foundation and Hope for Annabel have been collaborating on a gene therapy effort using Adeno Associated Virus (AAV) as a delivery system for functioning ATP1A3 to compensate for the mutated ATP1A3 associated with AHC. Our collaboration has involved pooling our financial resources and leveraging connections with scientists around the world to work together.

To eventually and hopefully get to a clinical trial with AHC patients, the AAV Project will have several phases with multiple steps in each phase. We are in just the first phase of the AAV Project where we aim to develop a viral vector to deliver extra ATP1A3 in mice to assess whether AHC symptoms improve after treatment.
In Phase One, the three foundations, along with contributions from AHC organizations in UK and Ireland, have already funded over $225,000 to complete the following steps:
1) Partnered with Dr. Steve Gray at UT-Southwestern who will help us lead the AAV Project – completed October 2018
2) Designed and produced four viral vectors to deliver functioning ATP1A3 – completed November 2018.
3) Injected non-diseased mice using the four viral vectors to deliver functioning ATP1A3 – completed November 2018
4) Assess which vector did the best job in delivering extra ATP1A3 to targeted areas of the mouse brain – started December 2018 and will be done March 2019

The next step will cost approximately $500,000 and is scheduled to start April 1, 2019 at the Jackson Labs. We will be selecting the best performing vector to deliver extra ATP1A3 to mice with AHC, and then perform a variety of behavior experiments to see whether the AHC symptoms show improvement. If the AAV treatment shows significant improvement in the mice with AHC, we would be on our way to the next phase of testing and closer to a clinical trial.
As a result of fundraising efforts, Cure AHC, AHC Foundation and Hope for Annabel have around $250,000-300,000 currently available to fund this next step of the AAV Project. While we are hopeful that continued fundraising will result in filling the gap in the coming weeks, we need every family to keep contributing to this effort.
Families and organizations wanting to support the AAV Project should feel comfortable directing fundraising efforts to one, two or all three of the foundations: Cure AHC, AHC Foundation or Hope for Annabel.
For questions about the AAV Project or specific fundraising efforts, please contact Jeff Wuchich (jeff@cureahc.org), Lynn Egan (lynn@ahckids.org) and Simon Frost (simon@tibercapital.com).
To donate and help us reach our goal, click www.ahckids.org
Thanking you in advance for your support.

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This latest film from Shift.ms has been inspired by the conversations of the www.Shift.ms community - I personally have been living with this medical condition and have had Relapsing Remitting Multiple Sclerosis (RRMS) for over 18 years now - Its a great thing to say that I have a hidden disability but sometimes this hidden medical condition can be very difficult, as people accept you to know and do anything a (so called normal) human-being would or can do.

Have a look at the video and do share this in your social media channels / also please do leave a comment below - always helps and encourages me to live with this medical condition positively.

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Find out more about the hidden symptoms of MS at www.shift.ms/invisible-symptoms/



Via
We always know that good advertising plays a key role in ones responsible development. Wildlife charities have worked very hard to be creative, and to pass a good message to their viewers about saving our planet. How important it is for us humans to start thinking and start saving our wilderness as we live in and what is around us. 

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Some of the very powerful adverts are from WWF campaigns. For those who have not a clue to what what WWF is all about: Here we go - 
WWF (World Wide Fund for Nature) is an organization which mission is to stop the degradation of our planet’s natural environment, and build a future in which humans live in harmony with nature. WWF was founded in 1961. It was the product of a deep concern held by a few eminent gentlemen who were worried by what they saw happening in our world at that time. Since those early days WWF has grown up to be one of the largest environmental organizations in the world. (more on Wiki)
Below we list WWF ads. Hope you’ll like it, and don’t forget to share and comment in the attached box below!

Fashion Claims More Victims Than You Think


Give a Hand to Wildlife

Elephant

Tiger

Eagle

Crocodile

Toucan

Zebra

Imagine This is Yours Adverts: 

Turtle

Tiger

Deer

Don’t Buy Exotic Animal Souvenirs

Don’t Buy Trouble: 

Ivory

Tiger Fang

Rabbit

Over-Fishing Wastage

Rain-forest Disappearing 

Forest for Life

Evolution Series: 

Elephant

Turtle

Tiger

Homeless:

Penguin

Bear

Seal

It’s Your Turn: 

Calf

Shark

Crocodile

Trees

Consuming the Earth is Consuming Our Future

The Future is Man Made: 

Trees

Reef

Turtle


Help by sharing these fascinating creative WWF ads with your social media network & friends. 
Many of you may have come across this post going around in various social media circles. The 10 years challenge defines what you or anyone else looked like in 2009 when facebook started and what they look like in 2019. 

As a wildlife conservationist - this 10 years challenge defines about the disaster our planet is gone through and We Don't Deserve This Planet. 


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A 10 year challenge that matters. This will not be the end for our elephants, we REFUSE to say goodbye. Stand by us and we will bring you stories of success, this we promise you. Let those that have been taken from us not have died in vain. 
PASS THE WORD. 
Photo Credit: Nick Brandt
#WeDontDeserveThisPlanet 
#10yearchallenge


Post Via
Coppersmith Barbet (Photo by eddy lee).

The Bird of the Day (#BOTD) series is back and my first posting is the beautiful Coppersmith Barbet (Psilopogon haemacephalus) or also known commonly as crimson-breasted barbet or coppersmith. 

It is a resident bird found mainly around the Indian sub continent and parts of south east asia. IUCN Least Threatened species and lives mainly in garden habitats, woodlands and groves. 

Picture taken by Eddy lee and take from via
image

Its finally 2019 and certainly there is no pressure.......

Hope this year goes well for all.

Via 


We are so grateful for all the amazing support, messages and generous donations to research from our wonderful family and friends in 2018.  A heartfelt thanks. We have been blown away by your kindness! 



In February 2018 at 6 months old, Anya was given the diagnosis of Alternating Hemiplegia of Childhood (AHC) after genetic testing for the ATP1A3 gene. This is an extremely rare condition, affecting one in a million; it arises from a chance, non-inherited error. It is something we had neither heard of nor something we could ever have envisaged our precious first-born having to struggle with. It’s been a very difficult year and we’ve seen symptoms (sometimes life-threatening) that we wouldn’t wish any parent to witness.  AHC has effects beyond the neurological ones and sadly Anya has had breathing and cardiac difficulties too. Almost all children with AHC have physical, cognitive and developmental disabilities across a spectrum. By the age of two 50% have epilepsy; and there is much being discovered and investigated about the cardiac and other life-threatening aspects of this condition.  
Your support has kept us going through these challenging times and we can never thank you enough. We know every day we have with Anya is precious and this year has reminded us of the fragility of life. We treasure any and every milestone she makes, however small or delayed, and take inspiration from her beautiful smiles and the joy she brings. Despite starting 2019 with Anya in and out of paralysis, distress and a host of neurological symptoms, we now have real hope for advancements in AHC research.   

There is currently no effective treatment for this condition. In addition, as it is extremely rare it doesn’t attract the traditional funding from drug companies. However, the hope on the horizon is AAV gene therapy for the ATP1A3 gene - (the gene responsible for approximately 75% of people with AHC).   


Therefore, we ask again if you could kindly help us. Anya is One in a Million and our rare gem. If you have even £1 or $1 and can help share this page with others who might also contribute, then with the power of sharing and social media that £1/$1 may become something powerful and contribute to the funds we need to progress this vital AAV gene therapy research.  Our worldwide AHC community has until April 2019 (less than 3 months away) to raise the money. 

What is AAV gene therapy for ATP1A3? 

AAV refers to Adeno-Associated Virus, a non-pathogenic virus which is used as the vector in many types of gene therapy.  A vector is a transporter or vehicle which can get the “good copy” of the ATP1A3 gene into the brain. It will be injected into the brain where it will hopefully then dominate over the “bad copy” of the gene.  

Researchers across several countries have already started. They are preparing the vectors, the “good copy” of the ATP1A3 gene, and the mice “models” which have AHC. In April 2019 all will be ready to inject AHC mice with the good copy of the ATP1A3 gene.  Once this is done researchers and clinicians can analyse the effects to see if the AHC symptoms improve or even, potentially, stop completely!! 

The April 2019 trial is a pre-clinical, non-human trial and is essential before we can move to testing the gene therapy in humans.  If the results are promising, ethical approval will be sought to fast track onto a clinical (human) trial given it is an extremely rare condition with no effective treatment. Indeed, the prospect for AHC gene therapy is exciting scientists and families since it may bring real hope for a devastating condition.  

Several foundations have already contributed money towards the first phase of this research (AHCF, CURE AHC, Hope for Annabel and numerous international family and parent AHC organisations worldwide).  Our families across the world are still trying to raise $500,000 towards the April 2019 stage. So far approx $100,000 has been raised and we passionately believe that every £1/$1 counts.  

Without this money this April 2019 landmark step cannot happen and we will be left never knowing if it would have worked or resulted in life-changing treatment for those with the ATP1A3 gene defect.  No research can ever guarantee success, but there is a real chance and without this important April step there is no chance to move onto clinical (human) trials.  

To lose that opportunity is not something any parent whose child has AHC wants.  In future, understanding AHC may also benefit many other diseases and conditions as our children with AHC experience almost all variations of neurological disorders in their range of symptoms.
Gene therapy is not as futuristic as previously thought.  In the last 5 years there have been major advancements in some other rare paediatric neurological diseases with gene therapy including Spinal Muscular Atrophy, Giant Axonal Neuropathy and Batten disease. Some of the expert researchers working on AAV gene therapy for ATP1A3 have worked on gene therapy on Giant Axonal Neuropathy which is now in (human) clinical trials.  

This research is being conducted in the USA so we are asking for donations direct to AHC F (USA AHC Foundation). They are working along with CURE AHC to jointly fund this project given the significance it has for so many with AHC.  It may even be able to help those without the ATP1A3 gene in the future if more genes are discovered that cause AHC.  


We are grateful for whatever you can give for all the One in a Million AHC heroes who suffer each day with this condition. If you could give even £1/$1 and share this page with friends who could do the same then each £1/$1 will add up.   

Our Anya is a One in a Million with this rare condition - she needs your financial help as well as your kindness in spreading the word to your contacts. If we can reach a million contacts by our story and message being passed on through your friends and contacts, we can surely achieve our targets and possibly a cure for Anya is within reach.  



No donation is too small. Thank you for anything you can contribute or share with others. For more information on the project there are links to videos below.
Link to Steve Gray Gene therapy chat at Chicago ATP1A3 conference:

Link to Simon Frost Gene therapy chat at Chicago ATP1A3 conference:

Link to Human Timebombs video: 


For contributing and being engaged with the Just Giving page visit here:

JustGiving - Sponsor me now!

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The Videos are copyright to AHCIM YouTube Channel