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Dec 29, 2017

September-November 2017 project report

This September, it was time again for our annual event “Children in Lieu of Flowers”. We suggested that school children and their parents refrain from buying flowers for their first day back at school and instead, transfer the amount allocated for this purpose to our charity fund. Many supported our initiative and carried flags in lieu of bouquets to school. The initiative was a roaring success and helped us raise 688059$. Thus, we beat our record of last year, which was 313070$. We did not expect that! The collected funds went towards helping 463 families in different towns and smaller locations. We were able to buy artificial lung ventilation machines and other medical equipment, positioning strollers that support the legs, spine and head for children with weak muscles, children’s nutrition, medications and hygiene items. We were able to pay for the services of nannies –so that the parents could have a few free hours to tend to other important matters. Such time is precious and rare.

 

Have a look below at the positive change that the ability to live at home, not at the hospital, brings to a life of a family with a disabled child.

“Dear and esteemed staff of the “Vera” charity fund,

Greetings from the Fedorkovy family. We live in Bogotol in Krasnoyarsk Region. It’s been nearly 18 months that you have been providing help to our elder daughter Diana, who unfortunately has not yet come out of the coma that she has been in for the last 30 months.

We spent a year at the intensive care unit of a hospital in Achinsk (also in Krasnoyarsk Region). This was a difficult time for us. I, Diana’s mom, lived alone in an unfamiliar town; my days were spent between the hospital and the rented apartment. You helped us bring Diana home. She is now on artificial lung ventilation, and her condition is still severe. However – WE ARE AT HOME! We live at our parents’ place. They also help out.

And now to the big news. This May we became parents again – with twins, Tasya and Tema. These charming babies would never have happened if we had not taken our Diana home. And twins – this is actually a miracle for our family. It must have been a present from our Lord.

Quite unexpectedly to us, we became a large family. To say that it’s difficult is to say nothing. However, we are happy that we now have the twins. We’ll manage it all!

Thank you once again for your help and engagement in the life of our family.

We hope that one day another miracle might happen, and Diana will wake up. This is our most cherished dream”.

 

Below is the data on allocated charitable expenditures this autumn:

01.09.17 through 30.11.17

Medical equipment and its service … $306535
Equipment consumables…………..... $116552
Special nutrition……………............... $99922
Financial help to families …............... $33269
Transport services …………….......... $435
Funeral services ……………............. $8549
Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $52780
Other expenses …………….............. $4730

 

*We thank Veronika Demichelis for her generous help with rendering this text from Russian into English.

Fedorkovy family
Fedorkovy family
Fedorkovy family
Fedorkovy family
Dec 29, 2017

"Vera" Fund celebrates its 11th anniversary

"Joy cart"
"Joy cart"

For us, this fall was full of milestones. We celebrated the Fund's 11th anniversary and the positive changes in the Moscow hospices, collected Christmas presents, and even made some dreams come true. Our donors and volunteers brought home-made pies, shared crops from their own gardens, and brought concerts, "joy carts", and therapy dogs to the hospices.

As we approached the World Hospice and Palliative Care Day, we presented our new communication strategy. For the last 11 years, we have been saying that if one cannot be cured, it does not mean that one cannot be helped. More and more people learned about hospices and realized that they might be less scary than they seem, and that the last hours, days, and months of a person’s life should be free of pain, filth, and humiliation. Now, we’d like to talk more about the importance of life for the rest of one's life. Therefore, we are starting our twelfth year with a new communication concept "Life for the Rest of Life".

In September, for the first time a head nurse became the head of a hospice in Moscow. A leader plays a crucial role. A leader is the first point of contact between our fund and the hospices. We are glad that the Butovo hospice will be managed by someone who saw what happens when the pain syndrome worsens, heard what the patients want, and understands what kind of support the relatives need.

The "Vera" charity fund organized the first conference "Palliative Care for Children", which had international participants and was supported by the "Lighthouse" children's hospice and the "Children's Palliative" charity fund. The conference participants attended lectures and masterclasses of leading Russian and foreign doctors, including one of the most prominent specialists on respiratory support Dr. John Robert Bach from the USA and the Chief of the Division on Pediatric Palliative Care at the Boston Children's Hospital, a speaker of many international conferences, Dr. Joanne Wolfe from the USA. 

The "Vera" charity fund has received two grants!  Now we will be able to develop two projects of major importance - "School of Care" and "Volunteers Help". 

A team of specialists from the "School of Care" will train family members, volunteers, home care providers, and medical staff in the basics of nonmedical care for terminally ill patients. For example, how to turn patients over without hurting them, how to feed them, how to provide all the "private procedures" while preserving their dignity, etc. In the future, it will mean that more people will be able to receive care in the comfort of their own homes. 

The "Volunteers Help" project has been training and coordinating volunteers in the Moscow hospices for many years, and now it will be able to do so much more! 

For example, we will organize more training sessions and meetings on the intricacies of communication with patients, their families, and hospice staff. 

These are only two out of many projects that our fund undertakes. However, we are very happy that we now have most of the funds for a whole year of these projects' operations.

We had a visit by Patch Adams himself! 

If you saw the "Patch Adams" movie with Robin Williams, this movie is about him. Patch is a medical doctor from the US, one of the founders of the hospital clowns' movement, and a writer. 
Patch travels around the world with a team of volunteers to support terminally ill children and adults. 

So there he was, in a patient's room of the Palliative Care Center, singing like Louis Armstrong while a patient was tapping the rhythm on his lap because he had been a drummer in his youth and loved the blues. 

Volunteers of the Degunino hospice came up with the idea of the "Wish Box" where patients can place notes with their wishes. One of them, Maya Vladimirovna, once wrote, "I’d like to meet Nikolay Tsiskaridze". Nobody had the connections to make this happen. But our volunteers wrote a post about this wish on social media, asked to share it, asked for help, searched far and wide, and it happened so that Nikolay Tsiskaridze heard about this. Two days later, he came to the hospice for a visit. And the next morning Maya Vladimirovna was no longer with us. It doesn't matter how many days one has left in his or her life. What matters is how much life there is in each of these days. We are very grateful to everyone who made this meeting a reality.

Thanks to the help of our donors and volunteers, we can proudly say that at the hospice, one can truly live one's life to the full for the rest of his or her life.

 

Our foundation has been spending the average of 206927$ to cover for the following needs of Moscow hospices:

01.09.17 through 30.11.17

  • Medical equipment – $13878
  • Meals – $12153
  • Financial support to hospice staff – $115470
  • Coordinators’ work – $61757
  • Other expenses - $3669

 

*We thank Veronika Demichelis for her generous help with rendering this text from Russian into English.

Patch Adams
Patch Adams
"School of Care"
"School of Care"
Sep 21, 2017

June - August Project report

Over the past three months we have rendered support to 204 families with terminally ill children all over Russia. The total amount of charitable expenditures for the period is $342,682.00 which we used to provide for the needs of those families. We spent it on medical equipment, consumables, care products and special nutrition.

We often receive grateful letters from parents of the children we’ve been supporting. Whatever we have managed to do for them became possible only because of your help and your donations. We’d like to share one story with you. It is a letter from the family mom whose daughter Polina has been under VERA's care:

«We spent our summer well and used every opportunity for nature walks. Of course, sometimes it was raining and couple of times the electricity went down because of strong severe thunderstorms. In such cases we used electric generator which helped us calmly wait for the good weather to come, or till the bulk power supply is on. Also we travelled to the countryside house where Polina’s cousins played with her outside from morning till evening. This was a really great experience for us, since the condition of Polina's health often gets in the way of her spending time with other children. A few days ago we took Polina to Altai fields full of sunflowers to show her this yellow beauty. My husband and I always feel happy when we can take Polina to the countryside and spend time together in the nature.

Our dear helpers, we received the parcel from you. There was the equipment we really needed – battery operated medical aspirator. This equipment is highly important for us, because it’s portable, so we can use it everywhere and be sure that now in case of a blackout we have a reliable helper. It’s really scary when your child is dependent on medical equipment, but we always try to stay positive and lift each other's spirits».

It’s just one letter among many we at Vera foundation receive each day. All these words of sincere gratitude are addressed to you, dear donors, to people without whom we would not be able to provide regular support to the terminally ill children and their families in all regions of vast Russia.

Below is the data on allocated charitable expenditures this summer:

01.06.17 through 31.08.17

Medical equipment and its service … $152,075
Equipment consumables…………..... $49,883
Special nutrition……………............... $41,848
Financial help to families …............... $32,267
Transport services …………….......... $2,571
Funeral services ……………............. $5,867
Work of team of this project (coordinators, psychologist, lawyer and etc.) …....…………….......……………........ $55,321
Other expenses …………….............. $2,850


With appreciation and warm regards,

Vera team

 
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