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:
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.
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)
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.