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Patient Support Group Meet @ Mumbai 14 July

Friends of Max hosted CML (Chronic Myeloid leukaemia) & GIST ( Gastrointestinal Stromal Tumour) Cancer patient support group meeting held on 14th July  2019 at Rustom Choksi Auditorium, Tata Memorial Hospital, Parel, Mumbai 400 012.

Mumbai monsoon can never be predicted and it was the same story this year also, rains were expected to start round 7th to 10th June but after a long wait Mumbai monsoon started around 24th June and it was pouring heavily till 10th July. All the CML & GIST survivors and caregivers were thinking about the event which was scheduled on 14th July 2019 at Tata memorial Hospital, Parel, Mumbai, The CML & GIST Patient support group annual meeting.

Surprisingly on Sunday 14th July morning it was bright and sunny and all CML & GIST patients and their family members started marching towards Tata Hospital, Parel the central part of Mumbai. Patients from all over Mumbai from Colaba- South Mumbai, Virar -West Mumbai, Kalyan- Central Mumbai, and from Vashi- Belapur- New Mumbai gathered for exciting annual meeting and by 9:30 AM the registration was completed .More than 200+ patient & caregiver’s were present at the meeting. To every one’s surprise our Bangalore leader Mr. Param also joined us to grace the occasion.

Amma (Ms. Viji Venkatesh) and FOM team was busy welcoming each and every person. Everyone was interacting with all our dear Philadelphians (CML champions) and enjoying delicious breakfast comprising of south Indian idli and vada with hot tea and coffee.

10:05 AM most of the seats in the auditorium were full, with the help and guidance of FOM Volunteers. Ms. Komal Surve, started the proceedings by welcoming one and all and the meeting was inaugurated with the National Anthem.

10:30  AM Ms. Priyanka Kandalgaokar gave  presentation on The Max Foundation , introducing us to its foundation and very touching story of Max. She also explained the various support groups which are functioning globally and also in India, such as:

  • Self-help / peer Support group
  • Professional facilitated Support group
  • On-line Support group (Forums)
  • Friends of Max (FOM) yahoo group (e-mail group)

Ms. Priyanka further explained the support groups of Asia such as Nepal, Bangladesh, Pakistan, Malaysia, etc. Presently Friends of Max support groups are active in 22 cities

Ms. Priyanka also highlighted the FOM activities in India stating as:

  • 16 Regional Groups
  •   4 GIST groups
  •   3 Core groups

International level participation by FOM is at:

  • GIST Horizons,
  • Rising Sun
  • UICC conference.

CFC

Ms. Priyanka proudly explained the successful stories of “Chai for Cancer” (CFC), the awareness and voluntary Fund raising program for the benefit of CML & GIST patients.

FOM – Board of Medical Advisors:

The Member doctors on the board of medical advisory body and their valuable contribution to the smooth functioning of FOM.

Social Media  

Friends of Max is actively present on various social media platforms such as:

  • Facebook
  • Twitter
  • Instagram
  • Website
  • Publications (Quarterly Newsletters)

FOM and its various patient support group activities were very well appreciated by all presented with loud cheering and claps.

10:45 AM FOM city chapter leader and trustee Mr. Nirmesh (Bhai) shared the wonderful and knowledgeable experience of CML & GIST patients and members of FOM giving details as:

15,000 +         FOM patients from India

  • Many Patients are with FOM for last 15+ years

          22 Cities

          250 + City chapter leaders

     12 Members of Trustee’s

Mr. Nirmesh briefly mentioned the main AIM of FOM as:

  • To create a safe and solid platform for patients and caregivers to share and learn
  • Conduct Monthly meeting with moto: “Together We Share & Learn”
  • CFC – Chai for Cancer a Fund-raising campaign patient focused activities in India & Overseas

Mr. Nimesh also requested patients to become member of FOM by paying Rs. 500/- per year which will help them to understand various activities and news letters from FOM and also the registration fee collected will be used for the needy patients.

It was great experience to all of us by knowing the FOM Aim and various activities.

11:00 AM      

Q & A Session with Medical experts

Ms. Priyanka introduced the panel of physicians

  • Dr. Advani ji, and
  • Dr. Banavali ji,

Ms. Viji (Amma) welcomed Dr. Advani & Dr. Banavali by giving brief introduction and

also giving kind regards for being associated with FOM for so long since the

formation of FOM in year 2003.

            Dr. Advani ji opened the meeting by giving the initial years of CML, patient history of treatment and stages of medicines available. He also appreciated Dr. Banavali for being with FOM and actively handling patients in Tata Hospital. He categorically stated that Glivec tablet is one of the best medicines in present period and normally 90 to 95 % patients get treated successfully.

Dr. Banavali ji supported Dr. Advani ji and explained that it was very difficult period for CML patient before Glivec, and doctors used to treat patients on trial-n-error basis. Q & A session was indeed a great knowledgeable experience for both CML & GIST patients.

Ms. Rashmi (City chapter leader FOM-GIST) thanked the doctors and small token of appreciation was given to panellist doctors.

12:45 PM

GIST awareness Day Celebration

Ms. Viji Venkatesh, Region Head, India & South Asia, The MAX Foundation presented the Video on GAD celebration, and informed that 13th July is declared as GIST International Day, and FOM is celebrating the same in India also.

She also told that GAD cake cutting ceremony will be done during the lunch time by all the GIST patients.

GIST Patients story

Ms. Rashmi, City chapter leader FOM-GIST, presented her story of GIST experience and told everyone to be smart and careful, also insisted to have the regular check-ups and take medicines as per doctors’ advice.

Ms. Shukla, City chapter leader FOM-GIST, presented her story of that how she had very difficult treatment in initial years (2002-2003) and after being registered with FOM in year 2003, and with the magic bullet Glivec she is leaving normal life for last 16 years.

Mr. George, City chapter leader FOM-GIST, presented his story of GIST and shared with everyone of how his disease comes in use.

1:15 PM        

Vote of thanks was given by Mr. Prasad and Urvashi and advised everyone to go for the lunch and the great session was declared closed.

All CML & GIST patients had delicious food, which was served by the Tata Memorial Hospital canteen. FOM thanked canteen manager for serving the delicious food and “Gulabjam”.

Overall the meeting was highly successful and lot of takeaways for one and all.

All dear Philadelphians started saying ‘Sayonara” with promise to meet again next year.

Report by Waman S Joshi

Mumbai FOM City Chapter Leader



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