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Annual Friends of Max Meeting in Mumbai – March 2007

Mar 29 2007
Reported by Kerul Patel

{mosimage} It has become a kind of tradition, this annual March meeting in Mumbai. This year the fifth Friends of Max meeting was organized at Meeting Hall of the Holy Family Hospital, Bandra on 11th March’07.
Around 263 members participated which included GIPAP members and their relatives and caregivers.

Eager FOM were at the venue as early as 9am to prepare for Registration. There were two desks set up – one registering FOM coming in from South and central Mumbai while the other registering North Central and North Mumbai. The idea was to have four groups each representing the area they lived in. This would facilitate the groups to interact more often and stay in touch with each other. The volunteers at the desk were in for a surprise. While registration continued from 9 am right thru 11 am, FOM poured in not only from Mumbai but from as far as Gujarat and Delhi. If people came in a little late, it was only an indication of their enthusiasm and determination to attend the FOM Mumbai meet; despite their other obligations.

Working diligently at the registration tables were Jaya, Appa, Sujeesh, Bindu, Kerul and Sharon. Amma, Ayeshah, Ashok, Ashok along with their other band of volunteers were busy preparing for the day’s events. Two big banners were put up just outside the hall. These banners were prepared by the Max team to enable the FOM to express their gratitude to Novartis for distributing Glivec at no cost and enable them to live.

As the FOM arrived, they signed in at the registration desks. They were all to be sorted out in four groups namely the Blue, Yellow, Green and Orange all identifiable by their respective group colored name tags. Subsequently, they all signed the banners expressing their solidarity and gratitude to Novartis for giving them a new lease of life. After having tea and snacks, and breaking the ice getting to know one another, all the FOM proceeded into the hall.

Inside the hall, the Max team had a section cornered just for kids who delving into arts and crafts and a variety of recreational activities enjoyed themselves all day long with little concern for the proceedings in the hall.

And there were many who turned up. Benaaz, Charita and Mini organised the volunteer force to look after the children by keeping them happily occupied with fun and games. During the course of the day, kids had a blast. Some painted, while others took to clay and demonstrated their creativity by forming Ganesha idols, animals and birds and various other objects. Kids will always be kids, and by the end of the day it was hard to tell if the kids were tired or the volunteers.

Ayeshah inaugurated the programme by welcoming the participants followed by a brief self-introduction by members of the MaxIndia Mumbai team. This was followed by a short presentation by Viji (Amma), detailing the history and formation of the Max Foundation International and MaxIndia. The presentation included a nostalgic collection of photographs on the activities of Max Foundation’s global and local activities spanning around six years. The presentation was followed by a group activity, where the members were divided into groups depending on the geographic areas.

The task for the groups was, to explore, identify and present the activities that each group wished to carry-out in their respective areas. Each group experienced active participation of the members. In each team, the members introduced themselves, sharing their experiences and how they coped with their condition. So enthused and charged were the groups that one of the participants whose father is on the GIPAP, but who could not tell his father that he had been diagnosed with CML, promised to go home and tell his father. He also resolved to bring his father to the next meeting, so that his father could experience energy and enthusiasm of GIPAP members like Mr. Hussaini, who at 78 rides around his scooter and still catches the local trains, at peak hours, to secure a window sit. Mr. Hussaini was diagnosed with CML 17 years ago. Thanks to his attitude to life and Glivec, his energy and vigor puts other people, half his age to shame. Mr. Hussaini was an inspiration and a live example which offered comfort to a lot of new entrants to the GIPAP.

At the end of the experience sharing and brain-storming sessions, leaders from each group presented the activities short-listed by them. The identified activities ranged from frequent interactions between the members, creating a regional directory of the members, to holding of Blood donation camps, working towards awareness to CML, counseling etc.

GROUP ACTIVITY CASE STUDY

Yellow & Green Group’s meeting and presentation – Kerul reports: –
Since there were fewer people in Yellow and Green group, they were clubbed together. Kerul and Jatin presented the outcome of their group’s discussion. It was decided that their group would be called the Yellow group for all future communications. The group took a leaf of what Max India did on a macro level and decided to implement their plan. Their four point project plan was as follows:-

1. To meet once every 3 months. The “Yellow” group decided that their first meeting was to take place on Sunday the 27th May 2007; between 10am and 12pm at Chowpatty Beach behind Nana Nani Park. Subsequent meetings and agendas would be discussed on that day.
2. To spend time amongst group members to interact, sharing information etc., to enable the group members to get to know each others well. Its decided that any good piece of information and/or stories would be shared with other FOM – circulated by e-mails, and photo-copy distribution.
3. The group decided that one such result of the group interaction should result in the creation of a database of information which could be added to the one already existing at the Max Mumbai office. The database would consist of list of inexpensive boarding and lodging places in the area. This would help other FOM from outstation when they come in to Mumbai to collect their quarterly quota of medication.
4. The group decided to collect funds. All fund collection would be done on a voluntary basis at the “Yellow” group meetings and submitted to Max Mumbai office. The idea was to make a start regardless of the amount collected. Subsequently, this project could extend to other friends and family members to raise finances for the benefit of others.

During the lunch break the participants had some fun, recalling and singing some of the old popular songs from Hindi films . The sumptuous lunch (all the participants contributed towards lunch) was followed by the much awaited Q & A session with Dr. M. B.Agarwal, a leading Hematologist and Hemato-oncologist and a most important and well loved friend of Max,

Dr. M. B. Agarwal answered queries on wide range of subjects concerning CML, Glivec, various treatment options and new cytogenetic techniques for diagnosis and prognosis of CML. Dr. Agarwal answered all the queries in Hindi, in simple to follow, layman’s terms.

The programme ended with a short session on experience sharing, which was followed by melodious songs by a young budding artist, Sagar. Sagar regaled the audience with popular Hindi Bollywood songs as per the requests from the audience. He also encouraged some of the young (and also the not so young talents) to sing some of the songs and even dance to a few catchy numbers.

The programme was precisely organized and executed by Viji, Ayeshah, Sharon and both the Ashoks. The programme had served its objectives:

1. It had provided a common platform for the members linked through GIPAP
2. It provided familiarization with the GIPAP members, networking and experience sharing
3. Members had their doubts cleared on wide range of subjects by Dr. M. B. Agarwal
4. Most important, they carried back with them, renewed hope and a sense of security from the experiences of the struggles of CML veterans who today lead a near normal life, with the access to Glivec.

This was evident from the gratitude expressed by the GIPAP members to Max Foundation, MaxIndia Mumbai Station, Novartis and Glivec and specially Viji.

CONCLUSIONS OF WORKSHOP

Over two hours of involved deliberations amongst the four groups resulted in each group identifying projects they would like to set up and work for. These included:

1. Periodic local group meetings
2. Creating awareness of the disease
3. Fund raising
4. Information database
5. Help Line
6. Complementary therapy
7. Blood donation drives
8. Emotional Support

From these common objectives the Final Four were chosen by the group as a whole for each of them to start working upon:

1. Establish Local Drop in Meetings every 8 weeks
2. Set Help – Line by Core Volunteer team
3. Devising Fund Collection Projects
4. Promoting Awareness for Blood Donation

Phone numbers of all participants taken down during Registration has been shared with the Core Group Team leaders for follow up and further group activity.

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