Newsletter #2 for 2017: Reflecting on a Winning Year for Cleft Friends




 


Welcome to the second newsletter for Cleft Friends in 2017.

View this email in your browser

Reflecting on a Winning Year for Cleft Friends

This year we have closed the gap by establishing the Cleft Friends brand as a solid partner of the Smile Foundation. We are excited to showcase our new logo and CI in this newsletter and trust that you will enjoy it as much as we have enjoyed creating it.

As we look back on 2017 and calculate the kilometers driven and flights taken to create awareness about cleft lip and palate and connect parents with each other in communities all over South Africa; every kilometer traveled was worth it and we would do it all over again in a heartbeat. A special highlight for 2017 walking into a ward at a Smile Week in Bloemfontein and getting to listen to these beautiful children sing their hearts out: 



Here are other highlights from the year:

Empowered

Our one-on-one support has grown our database to over 400 patients and parents across South Africa. Cleft Friends had the joy of travelling to seven Smile Weeks this year and the privilege of meeting 78 parents and children from all over South Africa affected by cleft lip and palate. We reached the North West, Northern Cape, Eastern Cape, Gauteng and Western Cape.

Our regional Whatsapp groups have grown to nine and we now cater for more than English speaking parents, we have grown to include Xhosa, Zulu and Afrikaans speaking parents. We have groups in Gauteng, Eastern Cape, Free State, Mpumalanga, Kwa-Zulu Natal and Western Cape.  Click here to find a Whatsapp Group in your area and connect directly with parents in your region.

Our Community Events took the shape of Breakfasts in seven cities and a High Tea in Port Elizabeth. Our partnership with SASHLA for the Breakfasts in Melrose Arch, Witbank, Pretoria, Durban, Bloemfontein, Port Elizabeth and Cape Town was a great success as 98 adults and 43 children came out to hear about the “Importance of Speech Therapy in the Cleft Journey”. Click here to view photos from these events. This year’s “My Story” High Tea took place on 12 August and showcased various role players in the cleft journey.  The High Tea took the setting of a talk show with talk show host, Michelle Brown, and various individuals who shared their story, from medical professionals to patients and parents. We hosted a total of 300 guests at the Tramways Building in Port Elizabeth.
Click here to view photos from this event.

Training Support Moms

On National Women’s Day, 9 August 2017, we trained three support moms in the Western Cape and grew our team of 17 support moms to 20. It’s with great pleasure that we welcome Monique Meyer, Megan Sampson and Taryn Dickenson to our team.

Advocated

This year Cleft Friends reinforced our core values by hosting a Baby Quilt competition as well as attending an event in Johannesburg called “The Patient Huddle”.

The winner of the Baby Quilt competition and an amazing two night stay at Kuzuko Lodge was Lesley Price from East London. Thank you to accredited judges Shan Fox and Antoinette Kriel as well as Yolanda at Pied Piper Quilt Shop in Port Elizabeth for helping us run a successful competition. We were inundated with donations of the most beautiful quilts that have been made with love and will be treasured by those affected by cleft lip and palate. Baby quilts were donated from Knysna, George, East London, Grahamstown, Port Elizabeth, Jeffrey’s Bay, Humansdorp and even as far as Durban. A huge thank you to everyone who contributed.

We were blown away by “The Patient Huddle” hosted by Genetic Alliance South Africa, Rare Diseases and Campaign4Cancer. We are all advocates for our causes and when we stand together we are stronger. To the organisers of this event, Kelly du Plessis, Lauren Pretorius and Helen Malherbe it was a privilege to attend such a professional and purpose-filled event. Thank you. Speakers included Lauren Pretorius (Campaign4Cancer), Neil Kirby (Werksmans Attorneys), Kim Ballantine (Camber Coaching), Vanessa Carter (hcsmSA) , Dr Helen Malherbe (GA-SA) among other panel guests. Topics included, How to set up a non-profit organisation or work together for sustainability? How will NHI impact my advocacy efforts? Understanding patient rights, patient confidentiality and POPI when running a disease awareness campaign. Best practices in the right of referral between healthcare professionals and patient advocates. Advocacy 101. How to manage burnout as a patient advocate or group leader?  Disease awareness through social media. Capacity building in dealing with the media, and Alliance Group Work. It’s events like this that empower South Africans to continue doing good things in our communities.

The Patient Huddle

Left: Heléna Cullis and Kim Ballentine (Camber Coaching) at the Patient Huddle. (#thehuddle)

Educated

We have spent the past few years listening to parents whose children are affected by cleft lip and palate and we have heard their needs. We are proud to announce the launch of three amazing resourced that can be read on our website, click here.  
  1. Cleft Lip and Palate Parent Guide (c) Smile Foundation
  2. Feeding a baby with a Cleft Lip and Palate (c) Georgia Jammine
  3. How Can I Help My Baby with a Cleft Palate to Talk? (c) Georgia Jammine
Our Parent Guides will be pure gold on *your cleft journey.

To all the parents
whose children have had surgery this year
in both government and private hospitals,
we are proud of the courage and strength you had.

Please take note our banking details have changed, see below. Should you make a donation or payment to Cleft Friends please email the proof of payment to info@cleftfriends.co.za.

The Smile Foundation Donations Account
RMB Private Bank, Account No.: 62193026864, Branch Code: 26-12-51,
Ref: CleftFriends/YOURNAME

Wishing you and your family a Happy Christmas and Prosperous New Year!

Closing the gap!

Copyright © 2017 Cleft Friends a project of the Smile Foundation, All rights reserved.

Our mailing address is:
info@cleftfriends.co.za

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list (REPLY STOP)


 

This email was sent to *|EMAIL|*

why did I get this?    unsubscribe from this list    update subscription preferences

*|LIST:ADDRESSLINE|**|REWARDS|*

 

Latest Stories

Franche & Stefan

Franche & Stefan

"We got so used to Olivia’s cleft lip and since her surgery we miss her wide open smile, even though we are so happy that it is all better." - Franche & Stefan, Gauteng

Melissa’s Story

Melissa’s Story

I am Melissa Pillay (27) from KNZ. I am a mum to two cleft cuties Rodrick (6) & Melisha (2) . I found out I was pregnant on 12 May 2015. At 5 months I went for an ultrasound, I found out that I was having a baby boy and his due date was my husbands birthday. The...

Monique’s Story

Monique’s Story

"My cleftie turned ten last month! Since she was old enough to understand, I have spoken to her about her cleft journey. I recall her seeing a photo of herself pre-cleft repair op, before she was able to speak properly. She looked at the pic and said “Baba lip sore”....